Tag Archives: autism acceptance

The Problem of Attributing Negative Intentionality to Autistic Behavior

Autistic "Behavior", Autistic Neurology

Problems arise when we attribute willfulness to behavior of an autistic and then regard it as fact. One problem is that because it is not willful on the part of the autistic, when the assumptions of “won’t” or “doesn’t want to” are erroneously made, it is a difficult (if not impossible) platform on which to start a positive relationship with another human being. Just like it is difficult for any human being to learn skills, feel comfortable and thrive when those around him think poorly of him, so is it for autistics.

Another problem arises when behaviors observed are stated in language ascribing intentional negative attribute or willfulness to the autistic such as “he won’t” or “she refuses to” in that it can undermine problem solving the kinds of supports that might be helpful.

Classroom Example

Here is an example based on the assumption of classroom staff that a student did not want to listen or join conversations of non-interest.

I was called in to see 5-year-old Max who was throwing toys at his classmates. When the classmates reacted in a negative manner such as shouting, “Stop that, Max!” or crying, Max would laugh and throw another toy at this child. Even though Max was getting negative feedback from his peers, it seemed to encourage him rather than deter him as evidenced by the increasing frequency of his behavior of throwing toys at his classmates.

When I asked the team if Max had a way to initiate conversation or request a classmate to play with him I was quickly assured that Max did not like to engage with other children and was given several examples such as he wandered around during Circle Time, never joining in and when the students did stations where they engaged in a variety of play activities in small groups, Max was never interested in their conversations or activities. Instead he picked up items in the station and threw them at the other students.

This team was stuck in their ability to solve the problem. When the neuromajority team members observed Max’s behavior their own neurology informed them. If they them- selves had been wandering around during Circle Time or throwing toys at their class- mates it would mean that they did want to listen or join in conversations or that the play wasn’t interesting to them. The team members were unaware that their own neurology was the base from which they tried to solve the problem.

The lens our neurology uses to look through at a particular situation outside of us is just that – the lens of our own neurology, propelling us to ask what would this behavior mean were I engaged in it? Our brain tabulates this information and provides us a sense making explanation without us even consciously thinking in this way or even being aware of the process! Yet, it is important to know our brains automatically problem solve for us in this manner even though we are not aware of our brains doing so.

It is important to understand when we make neuromajority attributions to autistics we are generally wrong AND it can cause us to become stuck in our own problem solving concerning the situation. This team hadn’t even considered the possible communicative intent of Max’s behavior because they thought Max was not at all interested in communication with his classmates or with anyone.

When Max’s behavior was reframed as misguided attempts to initiate conversation and join in play this same team of people became great problem solvers! A month later when I returned to the classroom I observed Max affixing the Velcro cloud to the weather square during Circle Time and then sitting on the masking tape X – his visual spot to sit at Circle Time.

Follow Up

Three months later I observed Max choosing a visual mini schedule from the available options, each option sequentially outlining a way to play at the kitchen station. The mini schedule showed him exactly what to do and in what order at the station. First a pan with eggs on the stove, next a spatula removing the egg from the pan, then putting it on a plate, and last saying, “Here is an egg to eat,” while placing the egg on the table. Another student sat down and pretended to eat the egg.

Conclusion

Max had received direct instruction on what to do at Circle Time and what to do at the kitchen station. It turned out he really was interested and did want to join in the conversations and activities in the classroom. He just did not have the skills to do so. Once the skills were taught and his neurology supported he was able to join in with his classmates in a more effective and satisfying way than to throw toys at them and laugh.

This story shows the errors we can make when ascribing negative intentionality and willfulness to behaviors of autistics.

Selection 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.

Introduction to Newest Book: Autistically Thriving

Autism, Autistic Neurology, , , , , , , , , , , ,

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

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.

Autistically Thriving!

Activism/Advocacy, Autism, Autistic Neurology, , , , , ,

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 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 Burnout and Aging

Autism and Aging, Social Considerations, , , , ,

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?

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BOOKS  BY JUDY ENDOW

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

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

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

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

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

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

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

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

Originally written for and published by Ollibean in October 2016. Click here to comment.