Tag Archives: autism

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?

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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.

Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology

Autistic Neurology, , , , ,

The title of this blog is the title of my newest book that is now printed and those who have preordered have started receiving their copies. In a matter of days,  all who have ordered should have the book in their hands!

This is the most substantial book I have written to date and it is also the first time I have self published a book. Initially, it was daunting to learn all the details and steps in the process and to hire various people for layout, proofreading and graphic design. Ultimately, I did it!  If you see any mistakes in my book please do let me know so that it can be corrected before future printings. That being said I want to tell you there is already one HUGE mistake. A whole section called Advanced Praise has gone missing.

Here is what happened.

In the process of making a book the manuscript goes back and forth between people who have various functions and the author. Initially, I had several months of back and forth with Susan, my layout person as corrections were made, text rearranged and other sections such as advanced praise, index, appendix, and references were inserted. Once it looked good to us it went to the proofreader I hired. I needed to decide which proofreading suggestions to accept and which to decline as I was given a multitude of choices, depending on how formal I wanted the text to read. (I went informal professional as I want it readable to John Q. Public as that is the most of the people in the world.)

One of the many corrections I accepted was to put the beginning pages of the book with Roman Numerals (APA Style) and to start the text with numbered pages. It took me several weeks to indicate and follow up with layout on the proofreading suggestions I wanted to accept.  Then, a new stage in the book making process was reached. There was no more content change – I simply looked at how the text appeared on each page – margins, headers, subheaders, indents, bold, italics, etc., etc., etc,. This back and forth went on for another month.

And this is where the most unfortunate mistake happened. The section in front of the book called Advanced Praise that was to have no page numbers did not get inserted. And nobody noticed until today when I opened my copy so I could get a list of contributors I wanted to send thank you notes. I discovered the whole section is not there!

It is entirely my fault. When I went with the proofreading recommendation to start with Roman numerals on Table of Contents and the numbers beginning with the first chapter I said nothing about inserting the Advanced Praise section without either style of page numbers in the very front of the book. And even though the final layout that went back and forth for a month or more had this section dropped I never noticed. At this point I was no longer reading for content, but simply looking at pages and comparing all the details of margins, headers, subheaders, indents, bold, italics, etc.for congruency throughout the nearly 300 page book.

I feel awful. I give a HUGE apology to all the 16 people who took the time to read the manuscript and write some advanced praise for my book. I told them that some of the advanced praise would go on the back cover and the rest would go inside the front cover. For some, it would be the first time their name was included in a published book. Even though I can include this section in future printings there is nothing I can do about the fact that it is absent from the first printing. Here is the missing section. If you know any of the wonderful people who contributed please give them a special thank you. I surely do thank each and every one of them.

Advanced Praise Section that inadvertently got dropped from the first printing of Autistically Thriving: Reading Comprehension, Conversational Engagement and Living a Self-Determined Life Based on Autistic Neurology:

Endow’s book does an extraordinary job of explaining how the autistic brain thinks and feels and does so without pathologizing autism. Professionals, educators, and families will find the book full of insightful explanations and demonstrative stories that demonstrate how an autistic person processes sensory input and understands information. This clarity allows the reader to then use Endow’s excellent strategies to support effective engagement in classrooms, at home, and in the community while still honoring neurodiversity and valuing the autistic way of being.

– Zosia Zaks, M.Ed., C.R.C., Manager of Education and Programming at Towson University’s Hussman Center for Adults with Autism

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Judy Endow’s new book Autistically Thriving, Reading Comprehension, Conversational Engagement and Living a Self-Determined Life Based on Autistic Neurology is a game-changing book!  Judy addresses the complex issue of living as a neurominority in a neuromajority world. Most books focused on helping autistic people are written by neurotypicals. This book has a deeper understanding into what is happening in the autistic brain because of Judy’s own neurology. Judy has developed practical strategies on how to improve flexibility in thinking, retrieval of information, reading comprehension and navigating complex social interactions.  This book details common dilemmas for autistic people such as obsessive thought loops and gives the reader novel ways of changing those thought patterns. Judy’s book is written with clarity and insight. I’m especially impressed with some of the theories Judy has developed that she shares throughout her book.  If I had one book on autism to recommend to parents, teachers, therapists and autistic people themselves it would be this one.

– Debra Muzikar,  Author of The Art of Autism: Shifting Perceptions.

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Some books expand your perspective, others add depth to your professional practice. Autistically Thriving does both, and does so with insight, wisdom, and humor. While the value of a neurodiversity approach is well understood, many organizations have struggled with how to put it into practice. Judy Endow’s own experience has provided not only the reason why this understanding is necessary when working with autistic individuals but also the tools to start implementing this approach.

–  CJ Webster, LMFT, Executive Director, Common Threads Family Resource Center

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 Autistically Thrivingis an excellent resource that will be of benefit to autistic people, their families and partners and those working with them. The book is a comprehensive survey of autistic experience drawn from the author’s extensive knowledge and observation of her own life. It offers a thorough understanding of autism from an autistic perspective. I highly recommend this book.

– Yenn (formerly Jeanette) Purkis, Autistic author, advocate and presenter

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Judy Endow is the ultimate expert – both walking the walk of autism and a professional who helps teachers and families understand the neurology of autistic children and adults and how to help them. She explains how autistics gather, process, store and retrieve information, and how their executive and other brain functions work, using non-medical language and many examples. She explains in detail how to provide the supports that allow autistics to develop into their best selves. There is always a neurological explanation when a person with autism doesn’t act as expected, and this book will help you figure it out and learn what to do to help. What a joy to have it all in one book! It is going to become required reading for the psychologists I supervise.

– Sandra McClennen, Ph.D., Psychologist

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Autistically Thriving is an essential resource in understanding students with autism.  Judy Endow blends current research, professional practice and personal experiences for a comprehensive look at the autistic neurology. This combination provides clarity for professionals and family members who strive to truly understand the students with autism in their lives.

– Brenda Vicen, MS/CCC-SLP, Speech-Language Pathologist and Assistant Director of School Services, Common Threads Family Resource Center

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‘To be autistic or not to be autistic’, is not the question in this book. One is either autistic or not autistic. This is a world that changes moment by moment. ‘To cope or not to cope’, is not a question in this book either. In order to be a part of here and now one must teach oneself to co exist.

The book draws the reader into its magical depths right from the beginning when we see how the narrator, as a child created one big picture from the words she heard, added more to the same picture, until she got a different way to escape this piling sensory confusion – she practiced creating pictures ‘in layers’ so that she could edit them if necessary. The world of words and pictures is a fluid world where flowing is the part of accommodation, art of explaining the chaos.

If one does not have a process to catalogue the magnified or minimized sensory jargon then according to the book – “it can feel being inside one of those mirror-distortion houses at carnivals.” Very well explained!

As a speaking autistic woman, whose writing is so fluid, she finds her speech is not sufficiently fluid to summon them at her will. This could be difficult to talk those ‘small talks’ that meander like streams without purpose in a social system.

The book includes brilliant poems and my favorites are – ‘Paper Words’ (where she ‘speaks up ink’ and ‘listen people to the ink’) and ‘Getting Out of Town’.

The book explains how some information can be amplified, some become unnoticed and some become distorted while they get selected to be processed. Their processing can be linear, non discriminatory with an out of control selection of a sensory event or totally be mono channeled.

The chapters have sub headings which create an easy finding of topics. The care taken in writing this book, the un-puzzling of a picture called autism, the philosophical pondering in the sections – ‘Is autism a disability of difference’, ‘When autism is a “Difference” and ‘When Autism is a “Disability”, makes us question how in the 21st century people with autism can include themselves in the fluid world of sensory and social flow.

The book is one of the best books on Autism where information and art meet to include each other from the beginning till the end.

⁃Tito Rajarshi Mukhopadhyay, Author of How Can I Talk if my Lips Don’t MoveandPlankton Dreams – What I learned in Special Ed

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The audience for Judy Endow’s Autistically Thrivingis broad: autistic humans, their parents/families, teachers, friends, supporters, and want-to-be-allies. Judy enlightens the reader on autistic information handling (i.e. processing) and how it impacts learning and relationships. She challenges the reader to drop former limited ways of thinking about autism. It’s time to try on a new manner of being, one where the autistic processing style is respected and supported instead of confining autism to defined behaviors that are thought need to be fixed or controlled. Judy takes us through a leap of understanding that could lead to an entirely new frontier of collaborative supports and ease of relationships for people with autism. Anyone who has someone in their life with autism needs to read this book and take it to heart.

– Kate McGinnity, Autism author, consultant/coach, presenter

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Autistically Thriving: Reading Comprehension, Conversational Engagement and Living a Self-Determined Life Based on Autistic Neurology helps the reader to develop a greater understanding of the autistic neurology. Judy weaves research, practice and personal perspective in a way that prompts the reader to reflect on the way they teach, converse and understand the perspective of others. This book takes the reader beyond autism, beyond disability and leads us to consider the “why” behind the actions of others. Judy is simply asking those of us with “typical” neurology to do what we ask those with different neurology to do every day, to understand and value the individual’s perspective and their humanity. This is a resource that every educator, parent and autistic should access!

– Lee Stickle, M.S.Ed., Director of TASN Autism and Tertiary Behavior Support and the School Mental Health Project.

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Truly understanding the autistic neurology in a way that goes beyond the diagnostic criteria is essential for providing effective supports to those with autism. In her book, Judy expertly tells the story of autistic people using a wealth of personal experiences and client examples along the way. Even if you think you understand autism, reading this book will provide a more empowered view and a deeper comprehension of the autistic experience. I highly recommend it for anyone touched by autism.

– Kirsten Cooper, MSW, Executive Director of the Autism Society of Wisconsin

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Autistically Thriving: Reading comprehension, conversational engagement and living a self-determined lifeby Judy Endow offers an amazing wealth of information, ideas and concepts that will support any parent or teacher in their effort to understand and plan for autistic neurology.  In this evolving era of Developmental Neuroscience, it is essential for caregivers to listen closely to folks on the spectrum.  The gifted few who are able to articulate how they experience the social world, and how they learned to survive in neurotypical society, have unimaginable stories to tell. In her latest book, Judy Endow has joined the likes of Temple Grandin and Donna Williams, as an ambassador for autistic thinkers. She has written a highly accessible book, sharing not only her own experiences of social memory, reading comprehension and regulating emotions, but also of others along with her solutions. I will read and re-read this book. I will hand it to teachers and quote from it at IEP meetings.  Bravo Judy!

– Kari Dunn Buron,  Autism Education Specialist, Teacher, Author

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Autistically Thrivingis a MUST READ! Judy Endow gives us an insight into the autistic neurology- providing us with a perspective on how to presume competence and support individuals in a new light. “In reality high-functioning and low-functioning are not real labels, having no definition, no skill set lists, and no diagnostic criteria. Yet these words are often used to determine opportunities that will be denied or extended to an autistic and in assigning the correct amount of personal responsibility and blame to an autistic for the way his autism plays out in everyday life.” YES, YES, YES!

– Lisa Ladson, Educational and Behavioral Consultant Co-Author of Lights! Camera! Autism!  Using videotechnology to enhance lives and Lights! Camera! Autism! 2: Using video technology to support new behavior.

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Too often, when professionals speak about autism spectrum disorders, the talk is started with a laundry list of characteristics, challenges and deficits.  I am guilty of this too. These are all provided from the perspective of the clinician or based on the understanding of other professionals. It often looks more like the DSM descriptions without true understanding how this impacts individuals who live with autism.  In her book, Autistically Thriving, Judy Endow invites us to learn about the characteristics and the impact of these characteristics based on information from those who live with ASD.  She provides us insight into the neurology that impacts sensory processing, reading, processing and overall life.  She then provides helpful recommendations on how to address the realities for those who live on the spectrum.  The book is comprehensive and provides meaningful insight and recommendations that can be used in a range of settings.  I have long admired Judy Endow for her honesty and willingness to pull back the curtain on ASD.  This book excels in doing this.

– Cathy Pratt, Ph.D., BCBA-D, Director, Indiana Resource Center for Autism

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“Judy Endow, MSW, LCSW has DONE IT AGAIN!  Autistically Thriving is a must-read  for anyone working with individuals with Autism. Read this book and then read it again! What a gift it is to learn from one of the best!”

– Ellen Eggen, MS, LPC, ATR-BC, Director of Mental Health Services at Common Threads Family Resource Center.

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Autistically Thriving, Judy Endow applies what we know about autism and learning to real life examples to help us further understand the neurology of autism. Useful strategies of the “Why didn’t I think of that?” variety are included that will serve to bridge and improve our relationships with those on the spectrum. Judy’s unique perspective and ability to provide a wealth of content in a concise passage will make this book an ongoing resource, anticipated to be reread often. Thank you Judy, for continuing to share your valuable insights that serve to make us better teachers.

–  Julie Arens, M.S.Ed, Autism and Behavior Support Teacher/Diagnostician

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Your book helped me understand autistic neurology. I now realize how little I understood.  Until reading this book, I feel I have not in any way fully understand or appreciated autistic neurology and how to maximize the potential of autism people.  Your book brought this to light with practical, easy to use strategies.  You broadened my understanding!

– Debbie Irish, Chair, Canadian Autism Spectrum Disorder Alliance

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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.

Mental Health Therapy and the Autistic Client: When Clinicians Don’t See the Autism (Can’t See the Forest for the Trees)

Autism and Mental Health,

Today, autistic people, just like the population at large, find their way to therapy when symptoms of depression, anxiety, OCD and other diagnoses become problematic to them in their daily lives.

As clinicians we need to understand the autistic operating system – in other words, to see the autism – if we are to be helpful to our autistic clients. When we do not have a strong grasp on this the results are that our clients are not served well. Clinicians without a good understanding of autism generally make one of two mistakes. Last blog discussed the phenomenon “It’s All the Autism” which means once the autism has been diagnosed every symptom from that point forward is attributed to the autism. Today we will discuss the other mistake frequently made by clinicians when they do not recognize the autism.

Can’t See the Forest for the Trees

Over time these clients tend to wind up with multiple psychiatric diagnoses for which none of the typical treatments have been effective in lessening symptoms. These clients’ individual symptoms are sometimes collectively better known as autism, but because one cluster of symptoms at a time presents each cluster winds up meeting the diagnostic criteria for something other than autism. Over time the client collects many diagnoses. However, regardless of how many labels are added, the client tends not to make much overall progress. Effective treatment for individual symptoms cannot be rendered because we have failed to see the autism. Autism means there is a different operating system and that the treatment of troubling symptoms must be delivered in a manner compatible with the autistic operating system.

Example: Ricardo is a 14 year old who’s parents sought out therapy for him because even though he had been near the top of his class academically during middle school, he was now failing some of his classes in high school. Additionally, he had gotten in trouble several times for shoving students. He didn’t have much to say except he was sorry and would try harder to do better.

Ricardo had received an array of services over time. When he was 5-7 years old he received Occupational Therapy for Sensory Processing Disorder. Ricardo did well academically until Fifth Grade when he began having difficulties with angry behavior. He was diagnosed with Intermittent Explosive Disorder and attended both individual therapy and an anger management group. In Sixth Grade he was diagnosed with both depression and anxiety and prescribed medication. Some days it seemed to be helpful, but other days it seemed the medication wasn’t doing anything to make Ricardo’s life better.

During the weeks in therapy several things were discovered. Ricardo was receiving poor grades due to incomplete assignments. It was learned that he had in fact done the science and history assignments, but had neglected to turn them in. He complained that he put everything in his locker, but then couldn’t find what he needed for his various classes. When his mom went to investigate she found most of the missing science and history assignments in his locker along with partially eaten lunches, some missing sweatshirts and a general mess.

Ricardo had difficulty with algebra. He said he couldn’t concentrate because the smell was so bad in that room. It was discovered the boy who sat behind him had stinky feet. Additionally, the boys had just come from gym class and they did not always take showers so the room smelled like a locker room three times a week. While these things were not noticed by most students Ricardo was totally distracted by it. He often missed the assignment when the teacher announced it. When he did hear the assignment he got it done during the classroom work time, turned it in and always got an A grade. He just had so many missing assignments that his overall class grade was a D. When asked what he did during the classroom work time when he was not working on the assignment he said he was just doing the usual – trying to put up with the smell of the room. It did not occur to him that even though the other students were doing the assignment that it meant he should be working on this same assignment.

Ricardo displayed aggression towards fellow students at school. It turned out that much of this aggression was in response to not understanding a social situation and/or in response to anxiety. Typically Ricardo would shove another student in the hallway. Sometimes it looked random in that there was no conversation immediately prior to the shoving. When asked about these incidents Ricardo could only say he didn’t know why he was shoving others, he knew it was wrong and would stop doing it. Then, he would shove someone again. Using cartooning, the shoving was drawn and then, once Ricardo saw it he could contribute more. Eventually it came to light that the shoving was tied to times where Ricardo misread social cues and had thought the student had somehow made fun of him. Then, later in the day, or sometimes even the next day, Ricardo would see the student, know the student was on his bad person list and shove him. The cartooning helped him discover how he knew the student was a bad person.

These were the first clues that Ricardo needed to be evaluated for possible Autism Spectrum Disorder, for which he did meet the criteria. This was important because treating Ricardo for each of the cluster of symptoms that earned him his other diagnoses had not been helpful in alleviating his struggles. ASD better explained the complexity and ushered forth the supports he needed to be successful.

Ricardo was given a check in person at school who assisted him with executive function tasks, developing a system for him to use his assignment notebook and to do and turn in assignments.

When he got the notion to shove another student, Ricardo knew that was something to draw out (cartoon) in therapy and that likely he was missing some social information that others knew (hidden curriculum).

A 5 Point Scale was put in place for Ricardo to manage his anxiety. Over time, with increased social understanding and decreased anxiety Ricardo no longer thinks about shoving others. He did so well that he was able to decrease and then go off his antianxiety medication.

Additionally, Ricardo’s parents started him with an OT who works on sensory regulation strategies. Ricardo now sits near the door in algebra, the location where he is not surrounded by the offensive smells.

As he was growing up the solutions to Ricardo’s difficulties had not been found even though he had received diagnoses at the time of each difficulty – a diagnosis he met the criteria for based on the cluster of presenting symptoms. Once it was determined that ASD better explained his situation than each of the individual diagnoses, the supports could be put in place that would help him be and do what he wanted in his life. It took some time, but once we could see the autism Ricardo could be supported.

Conclusion

When clinicians do not have a good understanding of the autistic operating system they tend to lean toward one of the two mistakes of either attributing everything to the autism or not seeing the autism at all. Neither is helpful in supporting therapeutic progress of autistic clients. The Autistic Operating System, Part Three will delve further into this topic. We will learn about the autistic operating system and how to deliver mental health therapy to clients who happen to be autistic.

(Note: In my practice I see clients who happen to be autistic. Their autism is usually not the reason they seek therapy, but it certainly affects how the therapy for their depression, anxiety or other presenting symptoms is delivered. When mental health therapy is delivered in a usual manner and not based upon the autistic operating system of the client it generally is not very effective.)

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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 July 30, 2017
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Toxic Autism Awareness: Fact from Fiction?

Activism/Advocacy, , ,

During the past week I have run into two different people in my personal life who have expressed erroneous beliefs about autism. Both people knew that besides being autistic myself, I am a therapist in the field of autism, have written many books and numerous blogs on various autism topics, and consult and speak internationally. Without a doubt, these people knew that I know about autism. And even so, they presumed their comments to be accepted fact so much so that they felt perfectly comfortable putting them forth as facts – never considering the information may not even be true about autism. In fact, if either of these folks would have at all been wondering or trying to sort out autism fact from fiction, I would have been the first person they would have asked. They were not trying to sort out good information from bad, but instead based their point of view on the “known” public perception of autism, presuming it to be factual.

Example One of Erroneous Public Perception of Autism

I encountered this public belief at the end of a story an older person was telling me. He was telling about an event where he ran into an old card-playing buddy. He really wanted to know what happened to his son, but was afraid to ask. I then heard all about this child who grew up during the time I grew up – in the 50’s/60’s – and all the naughty things this boy did. He tortured and killed the family pet, locked his parents out of the house so he could start it on fire, and put rat poison in the coffee canister to try to poison his parents. At the end of relaying these horrible deeds he said that kid was evil and if he were growing up today people would know he had autism, but autism just wasn’t known back then.

The autism proclamation at the end of this tale took me by surprise. This was from a person who I have known all my life. This person knows I am autistic and work in the field of autism. So, for someone who actually has known me for decades – I really don’t know how that person can believe evil is linked with autism. But then, that is part of the public perception. For myself, each time there is a school shooting, immediately after the initial wave of horror I feel, I wonder how long before the autism question gets raised. It almost always does.

Reporters typically lump autism and mental illness together. Today we know autism is not a mental illness. This doesn’t mean autism is better or worse than mental illness. It is just different. To complicate it further, some autistic people also have one or more mental health diagnoses. But this is beside the point for this discussion about evil people.

Those people who commit truly evil acts are not necessarily mentally ill or autistic. The Hitlter and Jeffrey Dahmer sort of evilness is out there. Thankfully, only a very small proportion of the population falls into this category. When something horrible happens it is human nature to try to come up with an explanation. The sense making that typically happens is that we tell ourselves the person committing the crimes is mentally unstable. We just have a hard time imagining anyone with a “right mind” such as the rest of us could do such horrible deeds.

One of the problems with this is that society has effectively used their sense making to draw a line between supposedly good and bad people. On the good side we have “normal” people. On the bad side we have people with mental illnesses and autistics. This sort of erroneous reasoning then makes it seem reasonable to be afraid of anyone with a mental illness or autism. People do strange things when they are afraid.

Example Two of Erroneous Public Perception of Autism

Several times a week I spend 2-3 hours at a public pool for the sake of maintaining sensory regulation so I can be my best at work and in my life. One day last week a woman in the locker room who knows I am autistic, with a voice of assurance and a rooting-for-me-on-my-side tone, told me I should not worry about having autism. She explained her belief that I am not autistic by telling me that I am nothing like Donald Trump.

WHAT????

She says something like; “It is all over TV this morning that Donald Trump is mentally ill. You are mentally ill with autism, but you are nothing like Trump. I wouldn’t worry about having autism if I were you. You seem as sane as me.”

All I could think to say was, “It takes all kinds to make the world go round. Even the ignoramuses amongst us.” she agreed, clueless I was indeed including her in a way as not to be offensive. It was the best I could do in that moment.

While I am not proud of my response, I am proud that I stuck up for myself. I only wish I had done so differently. Just the fact that both the people in these two examples had no qualms, no embarrassment, no sense that their words might be perceived as offensive or unwelcome shows how rampant these sorts of things are taken as real information about autism and about mental illness.

Our autism awareness campaigns of recent years have indeed made everyone aware of autism, but that public awareness does not match the facts. In fact, in many regards, John Q. Public is only aware enough of autism so as to be toxic to actually autistic people. This is serious. The definition of toxic by Merriam-Webster is “containing or being poisonous material especially when capable of causing serious injury or death.”

Today it seems socially acceptable to blame the evil behaviors of criminals on autism and reprehensible behaviors of politicians on mental illness. Don’t buy into this societally acceptable behavior. To buy into it is to perpetuate it. Each time you do so you are drawing that line between us darker, deeper and wider inviting fear to take up residence, distancing yourself from autistics and/or people mental illness, making us “those people,” the ones othered. In turn we are feared. Remember, people in power can do strange things when they are afraid. Is this the kind of world you want your children to grow up in?

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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 on March 16, 2017.
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