Category Archives: Sensory Solutions

Autism and Thinking With Colors

October 2, 2014Autistic "Behavior", Growing Up Autistic, Sensory Solutions, Social Considerationsadmin

I think in colors. My thinking colors have sound and movement. When I hear spoken words my neurology automatically goes for the match. When I was a girl, I heard the saying, “I got the world by the tail.” Immediately, the matching pictures of tail started popping up in my head. It’s like having a personal version of Google Images.

The initial picture search produced a variety of tails of animals. Then, there came the images of the ground mist I saw each morning when I went outdoors after breakfast. I assigned the world tail words I heard to this literal tail meaning that enabled me to name the pictures that had popped up in my head.

Specifically, I assigned this new tail meaning to the interaction of the sunlight and misty water particles I could see rising up from the earth’s surface whenever I was outside. For most of my life, I thought this literally was the earth’s tail.

Furthermore, I thought that people were somehow able physically to grab onto this tail and when they did so they indeed had the world by the tail! I had often tried to touch these sparkles, but now I had a new mission. I wanted to actually catch this tail so I too might have the world by its tail! I am glad this was the 1950’s because children played outdoors many hours. I was not interrupted in my efforts of trying to catch the earth tails.

Today, this would be called “a behavior” and more specifically would be labeled “stimming.” Unfortunately, today some would try to intervene and stop me from engaging in this behavior. Back then, it was just thought to be my way of playing. I used this environmental phenomenon of ground mist interacting with the sun sparkles to make sense of the progression of time across the day. It allowed me to be able to predict what would happen when (lunch, naptime, setting the table for dinner, etc.). I am glad nobody took my mechanism of sense-making away from me!

People with autism 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 at that moment because no picture popped up in my head to equal those words (Endow, 2013). I was often labeled stubborn and noncompliant based on other’s interpretation of my behavior. In reality, I was doing the best I could in the moment to participate and do what was asked of me by the adults.

Because autistics have different operating systems, we are misunderstood in many ways. Our operating system visits different, and yet often intense, experiences of aspects of the world that others never seem to notice at all! I would like to end with a poem illustrating the huge impact mismatched colors have on me.

Warring Colors
(Excerpt from Making Lemonade: Hints for Autism’s Helpers)

Colors are something her eyes can readily see

and when colors match
they tend to give back
a comfort to her eyes.

But when colors don’t match she can get distracted

and sometimes finds it harder to function
when her attention needs to be given
over to inside-her-skin physical senses.

If world-people could see what happens inside to her body

when colors are clashing outside of her skin
in the world all around her
this is what they’d observe

Her eyes start hurting as if they are burning.
Sometimes tears form and leak onto her face.

Her insides become disjointed

with inside-her-skin molecules
of her very being
trying to move away from each other

like sisters and brothers
in a family feud –

kin
not getting along,
choosing sides and
warring with one another.

This causes a physical aching.
Her muscles get sore and tired

Over the years she has learned that for her

it is not a very wise choice
to remain a long time inside of a room
where colors don’t match together.
(Endow, 2006, pp. 24-25)

Outside time dawns bright for me
While Misty Earth is making
A bright New Tail that rises up
Then back to me for taking.
(Endow, 2013, p.43)

Painting is EARTH-Tail Mist by Judy Endow
Note: Greeting cards and prints in three sizes are available for order 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 and published by Ollibean

We Are Not In Our Own World

September 14, 2014Autistic "Behavior", Sensory Solutions, Social Considerationsadmin

We need to be careful about how we think about and talk about people with disabilities. One example is the reference that those who are autistic or deaf or blind or have some sort of movement differences are “in their own world.”

The fact is we all share the very same world. But we also all try to make sense out of the world we live in. One way we all make sense of what we see in other people is to assign meaning to what we see according to what it would mean if we were engaging in that behavior. Most of the time this strategy serves us well (Endow, 2013).

Here are examples of behavior from students I’ve seen in schools along with the erroneous meaning assigned to the behavior and followed by the actual reason for the behavior.

Head Banging

Behavior: This little girl banged her head onto concrete walks and into walls several times a day both at home and at school. She was so forceful as to give herself a concussion. Because of that she was wearing a helmet.

Meaning Assigned to Behavior: People tried to make sense out of this little girl’s head banging. They took data in attempts to discover a pattern. They used the data to conclude the girl engaged in head banging whenever she was asked to do something she didn’t want to do.

Actual Reason for Behavior: After six months of mostly unsuccessful behavior shaping and reward systems it was discovered the little girl had a severe case of head lice. Once the head lice was eradicated the head banging stopped completely.

Dropping To The Floor

Behavior: Whenever this First Grader left his classroom with the rest of his class when he crossed the threshold into the hallway he would drop to the floor yelling, “No, no, no!” He would roll around on the floor until an adult approached him. As soon as the adult tried to take his hand and help him up this little boy would start playfully pulling back on her hand and giggling. After a short time of this he would get up and walk down the hallway to his destination. When the child was the only student leaving the classroom with the Speech Therapist or the Reading Specialist he did not fall to the floor.

Meaning Assigned to Behavior: Everyone on this child’s IEP Team had decided that he “pitched a fit” when leaving the room with the rest of the class because he preferred the one on one attention of an adult – any adult. They collected data and used it to confirm their hypothesis was correct because the “fit throwing” only happened when the little boy left the room with his classmates, but whenever he left with any adult, even a stranger, he did not “throw his fit.”

Actual Reason For the Behavior: The little boy had an unreliable sense of proprioception. For him, whenever seeing much movement was combined with space change along with lighting change his sense of proprioception bottomed out. These conditions were met each time several students left the classroom at the same time. When the little boy left the classroom with only one other person the movement was much less so as long as he held the hand of the adult his proprioception was such that he could walk down the hall even though the space and lighting had changed. Additionally, when his proprioception betrayed him and someone took his hand trying to help pull him up it delivered proprioceptive input to his joints and muscles after which he was able to stand up and walk.

These are but two of numerous examples of what can happen when we assign meaning to behavior according to what that behavior would mean if we were engaged in it. Furthermore, sometimes even the data we collect actually supports our wrong guess!

This is so dangerous. We wind up assigning negative character traits to our children. In the stories above the little girl was thought to be stubborn and insisting on having her own way and the little boy was labeled an attention seeker. Once the negative character traits have been assigned we all feel off the hook in terms of needing to solve the problem – in fact we start thinking and even saying that it is the child’s own fault, blaming him for willful behavior (Endow, 2013).

Both of these children were nonverbal and both were said to be “in their own worlds” when they were, in fact, engaging in behavior that communicated very real problems. We need to stop saying people are in their own world when they have disabilities or different neurologies such as autism. It serves nobody well when our words draw a line, placing those who are different away from us, those we say are “in their own world” on the other side of that line – the side for those people who we can then not consider real human beings. After all, they are “in their own world.”

Whether we understand somebody else’s behavior or not the fact remains we all share the very same world. To speak differently not only attempts to minimize the humanity of others, but also sets us up for our own failure as human beings. If you describe autistic or disabled people as in their own world will you please stop?

Thank you so much,
Judy Endow

REFERENCE

Endow, J. (2013). Painted Words: Aspects of Autism Translated. Cambridge, WI: CBRPress.

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 20, 2013

Over 50, Autistic and Still Learning!

August 7, 2014Autism and Aging, Sensory Solutionsadmin

Recently, I went to the Genius Bar at the Apple Store near my house with my laptop. It reminded me of just how far I have come in regards to technology in a few short years. It is hard to believe that I lived a half century on this planet before becoming versed in sending and receiving email! In 2005, my oldest, David, set up a Hotmail account for me and taught me how to do email. I had read an autism book and wanted to email the author. In a few months I had a few more people to email. It snow balled. Today email is my main source of communication with most others and I receive over 200 emails most days!

This is no small feat because computers are hard for me even though I now use a computer most of my waking hours for one purpose or another. Because of my sensory differences I have learned to dim the brightness of the screen. Additionally, I need to do my computer work in a particular way. Too much scrolling makes me nauseous and even though I am able to click the mouse at lightening speed I refrain from doing so as a rapid successions of changes to the appearance of the screen causes a dizzy, spinning feeling in my body. I get a lot accomplished every day using my computer, but do so with a steady rhythm and pace. I also use lots of ink cartridges for my printer because I print out rather than scroll through most documents. It takes a bit of figuring out, but I have a system down that serves me well.

Shortly after becoming comfortable with email I asked my oldest son to pick out one new thing to show me online. He showed me how to use Google. I began looking up info on all sorts of things. I discovered Google images! It has some similarities to the way my brain works popping up images in relationship to word input. Whoever constructed that system must understand how an autistic mind works!

In 2006 my first book,Making Lemonade, Hints for Autism’s Helpers, was published. I was getting invited to speak and wanted to learn how to make the pictures that speakers put up on screens for their audience to see. I asked around, found out this was called Power Point and googled “how to make power points.” That is how it happened that in 2006 my first book was published and my first power point was constructed. I still use that power point today even though I have learned ever so much more about power points since that time.

I do not especially like talking on the phone. My children all had cell phones, but it was not something I especially wanted for myself. As my business picked up I found myself out of town more often. My youngest was a senior in high school and I wanted to be able to check in with him when he got home from school and I was out of town. I wound up getting a cell phone. In fact, my son Daniel and I got the very same cell phones on a family talk plan. He had his phone all set up with all his friend’s names and numbers programed before I even had the instruction book read. Daniel uses his cell phone for many other things such as an alarm clock, to play games, to take pictures and he has his phone set up to ring differently depending on who is calling him. This was beyond me at the time. It was enough for me to use my first cell phone simply to call someone. In fact, I didn’t even like using a cell phone, but did so out of necessity.

2006 was a big year for change in my life. My youngest son went off to college. This necessitated another technology change in my life. I sent the family computer of to college with Daniel and got a new laptop for myself. I needed a laptop because of presenting, but just hated learning new technology. Even so, I discovered some really nice things about a laptop. First of all, the lighting behind the screen is much different than on a desktop computer! This increased my efficiency drastically! It enables me to use a computer for many hours at a time rather than 30-45 minutes before needing a break. Because I do not get reliable sensory feedback through my fingertips, it is very inefficient for me to use the scroll pad on my laptop. Instead, I must use a mouse.

My business expanded. I needed to be able to keep on while on the go. Once again, technology was the answer. In the summer of 2009 I got a Blackberry. It took me two weeks to read the instruction book and figure it out. Each day I forced myself to do something with my Blackberry so I could become used to using it. In 2013 I got an iPhone and it didn’t even come with an instruction book! Today I use it for email, social media, to take pictures, play games and to talk on the phone. A really great thing about the camera feature is that I can take pictures with ease because it does not jolt my sensory system in the way that cameras with flashes do.

I have learned to use both my iPhone and my laptop for many things. I learned to use Facebook as a way to keep in touch with my children. Today it has become a tool for keeping up with many in the autism community. Imagine a person with autism who has had difficulty making friends all her life now having over 4000 Facebook friends from around the world! I post many autism related articles on my Facebook page. Be sure to send me a friend request if we are not yet Facebook friends!

I made a new kind of Power Point to use in my presentations. I constructed automatically advancing slides using images and words on the slides and then learned how to imbed music background. The production is called The Power of Words: How we talk about people with autism spectrum disorder matters! In 2009 it became published as a DVD (AAPC, 2009). This DVD won the 2010 Mutimedia Award from Autism Society of America.

In 2010 I decided I wanted to construct a web site. So I googled “how to make a web site” and read up on it. I chose a website company and started following the online instruction tutorial. I made a five page website called www.judyendow.com. Each month I update the Calendar of Events page with my new speaking engagements and change whatever else might need to be changed. Today, this original website has morphed into something much larger and includes an Art Store with my paintings along with frequent blog postings.

In 2011 I became the owner of a mac laptop! It took me several months to get used to using it and caused much anxiety. One would think with all the new technology experiences I’ve outlined that I would be able to take new technology in stride without the high anxiety. Not so. Each new technology I set out to learn poses great difficulty for me in terms of becoming familiar with it. Many people on the autism spectrum find technology to be their friend. Not me. Most difficulty is due to the scrolling screen technology. It makes me physically sick to my stomach and I become too dizzy to be able to have the balance required to walk across the room. This is very unfortunate because it means I am missing out on some technology that could potentially be helpful to me. I am also grateful because it narrows down the scope of new technology I need to learn.

Even though I can listen on a conference call and sometimes talk, they are difficult for me. As a board member of Autism National Committee I have learned to use a group chat feature online that is used for board meetings. Nobody talks. It levels the playing field because some in our group can’t talk. In my work with Autistic Global Initiative (AGI) I have learned to use both individual and group Skype on my new mac. The group Skype allows me to see each person. Some of us talk and some of us type using the chat feature. It works well in terms of not having too much speaking going on. All of us in AGI are on the spectrum and between us have a wide range and variance of communication challenges. The group Skype and Go To Meeting sorts of technology have been quite helpful.

Nearly everyone I know is better at technology than I am. But that is okay. I know how to make appointments at the Genius Bar! In conclusion, I have in a few short years learned so many new techy things I have decided that for me personally, my 50’s will be deemed “The Decade of Technology!” Some new things I want to learn before I turn 60 include producing webinars and You Tube clips. Good thing I have a few years left – plenty of time!

I used my iPhone to take this picture
while out for my early morning walk today!

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 February 26, 2014

Preventing Meltdowns: Outsmarting the Explosive Behavior of Individuals with Autism Spectrum Disorders

September 1, 2012Autistic "Behavior", Sensory Solutionsadmin

Meltdown behavior is quite common for those with Autism Spectrum Disorders. And, indeed, the most frequently asked question by parents and educators is: “What do I do when my child has meltdowns?”

When the meltdown is occurring, the best reaction is to ensure the safety of all concerned. Know that explosive behavior is not planned but instead is most often caused by subtle and perplexing triggers. When the behavior happens, everyone in its path feels pain, especially the child.

Stages of Explosive Behavior

So, what exactly is explosive behavior? In my book Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals with Autism Spectrum (Endow, 2009), explosive behavior is defined as having four distinct stages, followed by a clearly defined recovery period. In addition, the physiological fight/flight mechanism is triggered immediately prior to the explosion.

In this model, the four stages of explosive behavior are the same for all experiencing explosive behavior and are depicted by four train cars called Starting Out, Picking Up Steam, Point of No Return, and Explosion. The idea is to try to prevent the train cars from hooking up because when they do we have a runaway train that ends in explosion.

Working backwards, the Explosion is the stage where the meltdown behavior is evident. Immediately prior to this is the Point of No Return, which is exactly what it implies — there is no going back from the meltdown because this stage is where the fight/flight response is triggered. The pupils dilate, and breathing and heart rates increase. Physiologically, our bodies respond as if our very lives are at stake, and we automatically behave accordingly: We fight for our lives. It is entirely impossible to reason with anyone in this survival mode. As soon as you see the child’s identified Point of No Return behavior you can know the Explosion is coming and need to do your best to quickly create and maintain a safe environment.

The place to impact explosive behavior is ahead of when it occurs. In the Starting Out phase, whispers of behaviors are evident. The Picking Up Steam phase is just that—the whispers become louder. Though you can learn to successfully intervene at these stages, the most effective way to manage explosive behavior is proactively, before the whispers even start.

Strategies to Prevent Meltdowns Before They Start

An individual mix of three major supports and interventions is usually most effective in preventing the first stage of meltdown behavior from starting. These three major supports include proactive use of a sensory diet to maintain optimal sensory regulation, visual supports, and managing emotions that are too big (Endow, 2011).

People with AS usually do not have sensory systems that automatically regulate; instead, they must discover how to keep themselves regulated. This is most often accomplished by employing a sensory diet. A sensory diet for a person with autism is like insulin for a person with diabetes. It is easy to understand that a person with diabetes has a pancreas that is unable to regulate insulin effectively. We can measure blood sugar and know the exact state of affairs, and from there figure out how much insulin the person needs.

Sensory Diet: Unfortunately, medical science does not allow us to take a blood sample to measure sensory dysregulation. However, we can figure out and employ a sensory diet to prevent dysregulation, and just like insulin prevents serious consequences for a diabetic, a sensory diet prevents serious troubles for an individual with ASD. As an adult with autism, I spend time every day on sensory integration activities in order to be able to function well in my everyday life. A sensory diet employed proactively goes a long way in preventing the Starting Out stage of explosive behavior from ever occurring (Brack, 2004).

Visual Supports: Another crucial area of support to put in place proactively is that of visual supports. As an autistic, I can tell you the saying “A picture is worth a thousand words” is the monumental truth. Although each person with ASD has a unique experience, processing written and spoken words is not considered by most of us to be our “first language.” For me, the meaning I get from spoken words can drop out entirely when I am under stress, my sensory system is dysregulated or my felt emotions are too big. Visual supports can be anything that shows rather than tells. Visual schedules are very commonly used successfully with many individuals with ASD. Having a clear way to show beginnings and endings to the activities depicted on the visual schedule can support smooth transitions, thus keeping a meltdown at bay. For maximum effectiveness, visual supports need to be in place proactively rather than waiting until behavior unravels to pull them out.

Managing Felt Emotions: A third area in which many with ASD need proactive support is in managing felt emotions. Most often, felt feelings are way too big for the situation. An example in my life is when I discover the grocery store is out of a specific item; I get a visceral reaction very similar to the horror I felt when first hearing about the 9/11 tragedy. I know cognitively the two events have no comparison and, yet, my visceral reaction is present and I need to consciously bring my too big feelings down to something more workable in the immediate situation. Managing felt emotions does not come automatically, but can be learned over time with systematic instruction and visual supports such as The Incredible 5-Point Scale (Buron & Curtis, 2004).

The good news is that explosive behavior can be positively impacted. With proactive supports, explosive behavior can be outsmarted so individuals with ASD can move on to living purposeful and self-fulfilling lives.

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 RESOURCES

Brack, J.C. (2004). Learn to Move, Move to Learn! Sensorimotor Early Childhood Activity Themes. Shawnee Mission, KS: AAPC Publishing.

Buron, K.D., & Curtis, M. (2004). The Incredible 5-Point Scale. Shawnee Mission, KS: AAPC Publishing.

First printed on Education.com with permission of the Autism Society.

http://www.education.com/reference/article/explosive-behavior-asperger-syndrome