Tag Archives: autism acceptance

Introduction to Newest Book: Autistically Thriving

This blog is actually the introduction that appears in my newest book (Endow, 2019, pp. xiii-xiv) available as of last week.

MOST ANYTHING ABOUT AUTISM and learning typically start out with the deficits of autism responsible for the problem experienced by the autistic. Then, it is followed up with ideas on how to address the deficits so as to impact the problem. If I were to start this book that way I would next talk about the diagnostic criteria. Here is what the DSM-5 says:

ASD Diagnostic Criteria

Persistent deficits in social communication and social interaction across multiple con-texts (current or history)

1. Deficits in social-emotional reciprocity…
2. Deficits in nonverbal communicative behaviors…
3. Deficits in developing, maintaining and understanding relationships…

Restricted, repetitive patterns of behavior, interests or activities… motor movement, sensory, sameness, routine, xated interests in objects or topics
– Diagnostic and Statistical Manual of Mental Disorders, 5th ed., 2013

In case you don’t know how the DSM diagnosing works I can fill you in. We have our everyday people on the face of the earth. They make up most of the population. Because this group makes up the majority we have decided their behaviors are typical and we label them normal. Then, everyone else is measured according to how far away from normal they land. And if they land far enough away from normal in enough areas they get a diagnostic label.

By design, DSM labels are framed in deficit terms. And in terms of diagnostics this deficit language is helpful. However, it isn’t very often helpful when we take this deficit-based language out of the diagnostic arena and use it to describe who and what autistic people are in this world.

We are ever so much more than the sum total of our diagnostic deficits. So, let’s begin with

autistic people – who are they? how do they think? what are their strengths? their skills? their way of understanding the world? How do they understand other people?

All of my life, until very recently, I have only known what I am not. It is because autism is largely measured by absence of neurotypicality. My hope for the future is that autistics coming up behind me will grow up with a more positive sense of self – learning who they are in this world rather than who they are not.

In that spirit I write from a perspective shift. A self-determined life is empowered through comprehension of the context in which we live. Let’s start with autistic people and comprehension – reading comprehension and life comprehension. How does it work? How do we empower autistics, based on their neurology, to comprehend what they read and to better understand the foreign land in which they find themselves living?

IMG_1275

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). The Power of Words: How we think about people with autism spectrum disorders matters! Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009c). 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.

Autistically Thriving!

Finally, after almost two years since it’s beginning, my newest book is in the printing process! A lot (besides working as usual) has happened during these two years – David (my oldest) and Heather welcomed Niko into the world (my first grandchild), Paul (middle child) and Laura moved  across the country,  and Daniel (youngest child) finished grad school. Also, during this time I went to Hawaii and a few months later had an unexpected surgery with a three month recovery. Entwined into all of life was the labor of this book!

Endow_Cover_05-28-19_FINAL_FRONTCOVER
Autistically Thriving

 Reading Comprehension, Conversational Engagement,
and Living a Self-Determined Life

 Based on Autistic Neurology

During this book writing process I’ve hardly written a blog at all. I hope to get back to blog writing in the near future. For now I will hopefully entice you with the Introduction of this new book:

AUTISTICALLY THRIVING INTRODUCTION

Most anything about autism and learning typically start out with the deficits of autism responsible for the problem experienced by the autistic. Then, it is followed up with ideas on how to address the deficits so as to impact the problem. If I were to start this book that way I would next talk about the diagnostic criteria. Here is what the DSM-5 says:

ASD Diagnostic Criteria

Persistent deficits in social communication and social interaction across multiple contexts (current or history)

1.  Deficits in social-emotional reciprocity…
2.  Deficits in nonverbal communicative behaviors…
3.  Deficits in developing, maintaining and understanding relationhips…

Restricted, repetitive patterns of behavior, interests or activities…motor movement, sensory, sameness, routine, fixated interests in objects or topics

Diagnostic and Statistical Manual of Mental Disorders, 5thed., 2013

In case you don’t know how the DSM diagnosing works I can fill you in. We have our normal everyday people on the face of the earth. They make up most of the population. Because this group makes up the majority we have decided their behaviors are typical and we label them normal. Then, everyone else is measured according to how far away from normal they land. And if they land far enough away from normal in enough areas they get a diagnostic label.

By design, DSM labels are framed in deficit terms. And in terms of diagnostics this deficit language is helpful. However, it isn’t very often helpful when we take this deficit-based language out of the diagnostic arena and use it to describe who and what autistic people are in this world.

We are ever so much more than the sum total of our diagnostic deficits. So, let’s begin with autistic people – who are they? how do they think? what are their strengths? their skills? their way of understanding the world? How do they understand other people?

All of my life, until very recently, I have only known what I am not. It is because autism is largely measured by absence of neurotypicality. My hope for the future is that autistics coming up behind me will grow up with a more positive sense of self – learning who they are in this world rather than who they are not.

In that spirit I write from a perspective shift. A self-determined life is empowered through comprehension of the context in which we live. Let’s start with autistic people and comprehension – reading comprehension and life comprehension. How does it work? How do we empower autistics, based on their neurology, to comprehend what they read and to better understand the foreign land in which they find themselves living?  (Endow, 2019, pp. xiii-xv)

CLICK HERE TO ORDER

AUTISTICALLY THRIVING BACK COVER TESTIMONIALS

Autistically Thriving is a groundbreaking book that shows people on the spectrum how to leverage the natural strengths of their neurology to navigate the world effectively and live up to their fullest potential. Wise, compassionate, engagingly written, and deeply knowing about the distinctive cognitive styles of autistic minds, Endow’s book makes the lessons of the author’s bold, creatively atypical life available to the next generation of neurodivergent innovators.
– Steve Silberman, Author ofNeuroTribes: The Legacy of Autism and the Future of Neurodiversity

*****
Judy Endow has been my best teacher and friend for several years. My education continues with her book Autistically Thriving. This groundbreaking book helps everyone understand the autistic neurology. This is the first step in supporting autistic people to excel. If you read one book on ASD this year, this should be it!
– Brenda Smith Myles, PhD, Speaker and Author, Excelling With autism: Obtaining Critical Mass Using Deliberate Practice

*****
Judy Endow has again created another thought-provoking yet practical resource for supporting those on the autism spectrum. It is not only filled with deep insights and rich examples, but it is honestly one of the best books I have ever read on how to support students who have unique ways of engaging in lessons, understanding material, and interacting with others.

Judy Endow simply sees things that others miss. Drawing on her experiences as a social worker, education consultant, and individual with autism, she provides the “why” of learning challenges along with the “how” of responding to them. This is, of course, a book about teaching and you will learn a lot about literacy instruction, social needs, and advocacy, but Autistically Thriving will also inspire you to think differently and truly appreciate the uniqueness and beauty neurodiverse learners bring to a classroom.
– Paula Kluth, Ph.D., Author of You’re Going to Love This Kid: Teaching Students with Autism in the Inclusive Classroom  

*****
The book is one of the best books on autism where information and art meet to include each other from the beginning until the end. The layout of chapters, subheadings and vivid explanations can captivate the attention of any one who wants information about an autistic person’s sensory struggles, coping mechanisms of the mind and growing a philosophy out of odds. I would recommend this book to parents and providers who want to involve themselves in the life of an autistic person.
– Tito Rajarshi Mukhopadhyay, Author of How Can I Talk if my Lips Don’t Move and Plankton Dreams – What I learned in Special Ed

*****
In Autistically ThrivingJudy Endow acts as a translator.  She takes the autistic experience and puts it into words.  These are the words that most of us in the neuromajority need to more fully comprehend the neurological processing of autistic people.  This comprehension will lead the way to a future full of more respectful, collaborative, and effective support systems for autistics.  These systems, in turn, will allow more people with autism not to just “get by”, but to truly THRIVE.
– Sharon Hammer, LPC, Co-Author of Lights, Camera, Autism Series

Endow_Cover_05-28-19_FINAL_FRONTCOVERCLICK HERE TO ORDER

BOOKS  BY JUDY ENDOW

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

Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult.Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2006). Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press.

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

Endow, J. (2009). Paper Words: Discovering and Living With My Autism.Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009). Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals With Autism Spectrum Disorders.Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2010). Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go.Shawnee Mission, KS: AAPC Publishing.

Myles, B. S., Endow, J., & Mayfield, M. (2013). The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment.Shawnee Mission, KS: AAPC Publishing.

Autistic Burnout and Aging

Last September I returned from a vacation that I had been dreaming of taking for several years. I had booked my vacation quite a long time ago. After booking it, my personal resources declined. Many autistics know this phenomenon as autistic burnout. I am beginning to understand that there is likely some interplay between autistic burnout and the aging process.

In autistic burnout we come to the end of our resources that enable us to act as if we are not autistic in order to meet the demands of the world around us. For me these demands have included things like being able to raise my children and maintain employment. I have gone through a few distinct periods of burnout and have successfully managed them by withdrawing from the world as best I could while carrying on daily commitments to children and to employment. Twice during my adult life I had to severely limit my gainful employment because the burnout was too great to enable me to continue. I always have been good at planning and saving so each of these times I had a saving account to draw from for several months.

Finally, I had accumulated enough savings to feel confident to book one of my dream vacation! For many years I have found good deals on Alaskan cruises to see Glacier Bay and at long last I felt in a place to be able to actually book the cruise. I have a particular love of water in natural settings. It was very exciting to plan and dream of this upcoming vacation.

Then, autistic burnout began to rear up again. I thought I knew just how to navigate the burnout. At least I knew to slow down, pull back from social engagements and increase sensory regulation time and modalities. In the past these things had been helpful and allowed me to get back in sync after a few months, thus being able to venture back out into the life I wanted. Not this time.

I am thinking the combination of autistic burnout along with aging has made this episode quite different than the other times burnout has been problematic. For almost a year now, I have been experiencing somewhat of a burnout, but the difference is that I am not able to get past it like I have previously.

Over the months I’ve ramped up my sensory regulation. I am now spending about four hours per day devoted to keeping myself regulated. Some of the things I do include swimming, walking, bike riding, massage, and absolute quiet. In the past all of these things worked well. Now all of these things just sort of work. It means that no matter how much I do I never feel completely regulated.

Then, my vacation time arrived and regulated or not it was time! And, I was excited – very excited. So, off I went – first to San Francisco for some days and then on the cruise. I was by myself most of the days in San Francisco. I did some sight seeing, but all in a way that worked well for me. I was not rushed and did not have anyone else with me. Most of my friends could not understand why I was looking forward to being completely alone on vacation in San Francisco, but it worked very well for me. I could come and go as I was able and stop whenever I felt the need.

I did have friends who met up to have a day in San Francisco before boarding the cruise. While on the cruise we went our separate ways during the day, sharing a dinner table for our evening meal. It was fun to compare notes on who did what during the day and it was just enough social demands for me to enjoy the company, but not be overwhelmed. I could go the entire day without speaking to anyone and walking around the deck viewing the waterways or watching different activities on the cruise ship.

Now that I am back home I have realized that this burnout is different. Even after a lovely undemanding time away my body regulation has pretty much stayed the same – it has not improved as I had anticipated. Now I am thinking this present autistic burnout is combined with effects of getting older. It is like my body has hit a new normal of sorts, meaning that it has slowed down. It seems that no matter how much sensory regulation I do in a day that my body will never get back to what I consider ground zero. Perhaps this part is some of the aging of my body – it just doesn’t spring back to where I can be all chipper and ready to roll full steam ahead.

While at sea I thought a lot about this. In fact, I left my ideas and expectations of my younger self somewhere between Juneau and Skagway. By the time I arrived in Victoria I was trying on my newly found freedom of being okay with the slowed down self of me. The walking tour along the seaside was going too fast for me to be able to take the photos I wished to take. When the tour veered away from the seaside trail I excused myself so that I could be alone. I took my jolly good time walking back to the ship and taking over 300 photos during a leisurely stroll, I enjoyed it immensely!

Now that I am home I am continuing to practice being kind to myself by adjusting my own expectations of how much I do in one day. As an autistic I have for several years been doing the same quantity of employment, housework, art production, regulation, reading, writing, etc. both daily and weekly. Following a schedule is important to me as is getting things accomplished. I didn’t realize my self imposed expectations needed to be adjusted.

Spending ten days on a ship surrounded by natural waterways helped me to understand that autistic burnout may be impacted by the natural aging process, meaning that I will not come out of an episode of burnout at my younger starting point. Because so little is known about autistic people and aging, those of us who are getting older can at least start a discussion about it. I personally am wondering just now if the years of acting – passing as a neuro-majority person – impacts the natural aging process. Do autistics age faster because so much personal physical resources are impinged upon in order to year after year appear to be as typical as possible so that we might fit in enough to pass as somewhat human to the rest of society? And if so, is this a fair price to pay? And fair for whom?

IMG_6746

BOOKS AND DVD BY 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). The Power of Words: How we think about people with autism spectrum disorders matters! Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009c). 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 in October 2016. Click here to comment.

Autistic Neurology and Behavior

Autistic people use behavior just like people who are not autistic. Basically, when a problem is encountered, people behave in a way so as to fix the problem. We all do this, whether we are autistic or lack autism! However, we live in a majority-is-the-norm society. This means that the behavior most individuals employ to solve day-to-day problems is considered the norm. We call their behaviors solutions.

Just like everybody else, when autistics come up against a problem, we employ a solution to remedy that problem. Our behavior, even though it is a solution, it is called “a behavior” meaning it is bad behavior. This is how it often works out that those around us want to fix what they have defined as the “problem behavior.”

This is one reason I have never ending employment as an autism consultant to school districts. It is my job to sort this out for staff in a way that makes sense and helps them move beyond the difficulties they experience with autistic students. I find once teachers understand autism neurology they are able to join with their students finding viable alternatives that work in the classroom environment. Here is a familiar example I run into quite often:

Scenario as Reported by Teacher: “My student with autism simply refuses to do any school work. Every time I request he do some work he simply says, “no” and won’t do it. When I persist, encouraging him to try, he just gets up and runs out of the room. If I try to stop him from leaving he hits me, screams and throws things, often destroying the room. What should I do?”

Understand the Underlying Autism Neurology:

  1. Teacher: “My student with autism simply refuses to do any school work. Every time I request he do some work he simply says, “no” and won’t do it.”Underlying Autism Neurology: Often “no” or “I don’t know” is a default response when the autistic neurology experiences a surprise. A neurological surprise is anything unanticipated in the moment. An autistic neurology is a completely different operating system than a typical neurology. Therefore, when a teacher shows up at the side of the student’s desk with work, even though it would not be surprising to most students, it hits the autistic neurology as a surprise. This is a neurological event and as such, not a choice for the student. This isn’t a won’t (as in “I will not do what you ask”), but a can’t – the neurology cannot access anything but unexpected surprise mode. In this mode, most autistic students develop a canned response and often times we hear “no,” “I don’t know,” or some other such phrase. These phrases are solutions because they serve to make the unexpected surprise go away. It isn’t about refusing school work. It is about managing a neurological surprise as expediently as possible to prevent it from getting out of hand.
  2. Teacher: “When I persist, encouraging him to try, he just gets up and runs out of the room.”Underlying Autism Neurology: When the autistic neurology is presented with an unexpected surprise, saying “no” or some other phrase allows shut down so as to protect one self from this neurologic surprise. If shut down is challenged the neurology is forced further along into survival mode – meaning flight or fight. Reasoning is not involved. Flight or fight is an autonomic nervous system response. This particular student’s automatic survival response was flight so he left the room in response to perceived threat. It does not matter that the teacher presenting schoolwork was not an actual threat, but that the autistic neurology often automatically codes unexpected surprises as threats to the system.
  3. Teacher: “If I try to stop him from leaving he hits me, screams and throws things, often destroying the room.”Underlying Autism Neurology: This student’s autism neurology was hit with an unexpected surprise that forced him into shutdown. When shutdown was “challenged” the autonomic nervous system survival mode was further triggered into flight. When flight was prevented the autonomic nervous system engaged in the only remaining survival mechanism – fight. When engaged in this sort of response the autonomic nervous system triggers body physiology to be extremely strong and capable of putting on the fight of one’s life because survival depends upon it.

Solution Based on Autism Neurology: The solution for this school team was two-fold. First, until the presenting difficulty of doing schoolwork is remedied, this student will be given a way to leave the room when he needs to leave so that we do not trigger a survival fight. Because this student loves maps, a story about following the map when needing to leave the room was presented with the map embedded right in the story. I suggested pairing leaving the room practice with the story as many times as needed. After all, we want him to leave and go to the designated safe spot rather than triggering a survival fight.

Then, we needed to get the student on the road to doing schoolwork. The team had been quite stuck in trying to solve the stated problem of refusing to do work and, if pressed, leaving or trashing the room to avoid doing schoolwork. Now the team shifted from managing oppositional defiant behavior of refusal and avoidance to solving for autism neurology. It was so much easier to solve for unexpected surprise and unclear expectations as evidenced by the list of supports they brainstormed! (This list includes using interactive visual schedule, priming, use of visual timer, and using reinforcement.)

Conclusion: It makes sense that when you see behavior in others you assign meaning according to what it would mean were you engaged in that behavior. This strategy serves most teachers well as they share the same underlying neurology as most of their students. However, when working with autistic people remember the neurology imposes a different operating system. Strive to understand it. The more you understand the less often you will become stuck. Besides being kind and being the right thing to do, it is far more expedient to support autistic neurology than it is to assume negative character and ill intentions about your student with autism when he is struggling.

15823078_10154253988798177_2321910539766123249_n

BOOKS AND DVD BY 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). The Power of Words: How we think about people with autism spectrum disorders matters! Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009c). 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 November 30, 2016.
Click here to comment.