Category Archives: Activism/Advocacy

Murdering Autistics is WRONG

It happened again. An autistic was murdered by his mother. His name was Alejandro and he was 9 years old. The news media shares story as if the story is about Alejanro’s mother and not about him. For some reason, in our warped culture, being autistic  means you don’t count – you are not considered human being enough to count even after someone tries to murder you! In fact, you will likely not even be part of the story after the first few sentences. The story quickly becomes one of excuses for the mother or caregiver who murders the autistic.

At our core, as a society, we hold the belief that a disabled person is better off dead. We don’t actually talk about this belief, but it is what is underneath when so many can read the story and agree with and sympathize with the murderer. In no other murder scenario do we do this – sympathize with the murder and blame lack of services. Disabled people are construed as a burden to their families and are even thought to be the fault of their own murders! Sympathy starts pouring in for the poor murderer who had no choice and who, in fact, did what any one else would be driven to do under the same circumstances is what we are told by news stories and social media commenters.

WRONG

WRONG

WRONG

There are ever so many things wrong with this story line we see repeated about the “unfortunate tragedy” due to the “lack of services” for the family of an autistic person, while writing out the actual autistic person who was in fact murdered or had an attempt of murder carried out against her.

Here are some facts the news reports do not tell us:

1.  Autistic people are human beings. Human beings do not deserve to be murdered. PERIOD. NO ifs, ands or buts.

2.  Autistic people’s lives are not worth less than other people’s lives.

3.  Autistic people do NOT cause their caregivers to murder them.

4.  Lack of services is not a reason for murder.

5.  If you are a parent or caregiver and feel the only way out is to murder your child you are in crisis. Call a crisis line. Your child may be removed from your care temporarily. Foster care isn’t great, but it will keep your child alive while your crisis state can be addressed.

I know by writing this I will have many parents of autistic children jump all over me saying all the usual things they say. So, I will tell you a bit about me ahead of time.

I was “severe” enough as a child to be institutionalized. As a teen I lived in two foster care arrangements that were not appropriate for an autistic teen. One was a group home for mentally retarded adults (that word was not a bad word at the time) even though I was neither mentally retarded or an adult. The other was a group home for delinquent teens; I was a teen, but not delinquent.

It took me a long time to grow up, but I did grow up. As a parent I was told my autistic son  had failed all the services my county and state had to offer and that I should call the police when he became violent.

I foster parented a severely autistic teen for a short time. I went to college. I got a master’s degree in social work. I worked in clinical settings. Eventually, I limited my practice to autism. Today I have my own business. I am an author, consultant, artist and international speaker on autism topics.

I write all this about myself because, nearing retirement, I have experienced all sides of this many-faceted story. I know how it feels to be the victim, the mother, the caregiver and the social worker.  I understand foster care from the angle of the kid in the system, the foster parent and the social worker. And I can tell you that at the end of the day no matter how I look it I know this:

IT IS WRONG TO MURDER YOUR AUTISTIC CHILD.

If murder is looking like a solution to you it means you are near the breaking point and need help. Call your local crisis center and say these words, “I am thinking about murdering my autistic child and here is how I would do it.” Then tell them your plan. If you do not have a local crisis hot line go to the nearest hospital emergency room and say the same words. It is not a perfect solution. It is a crisis solution, but will ensure you get someone to help you in the moment because murder is not a solution to your problem.

Here is the link to the original news story from the weekend.

Image may contain: outdoor, water and nature

Photo Caption: Duck family by the side of a waterway on a sunny day.

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 AdultShawnee 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 DisordersShawnee 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 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.

Toxic Autism Awareness: Fact from Fiction?

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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11-9: Why the Disability Community is Grieving

11-9 feels so much to our disability community like 9-11 to our society. Our grief is deep. We are not being overly dramatic. Yes, 9-11 saw significant loss of life. Living, breathing people – lots of them – died that day. The reason those of us in the disability community feel this sort of grief today is because our human worth is on the chopping block. We know today that many of our friends, neighbors, fellow citizens out there in the community at large have voted against our humanity. For some of us our own family members, whether knowingly or unknowingly, voted against our human worth when they voted for Donald Trump.

The disability community is not alone. We share this fate with people of color, anyone not professing Christian faith beliefs, those inclusive of more than heterosexual-only relationships and all of the female gender. More than half of the population of our country falls into one or more of these categories. Even so, collectively, we have decided that it is okay to divide up the people of our country into factions with only white, heterosexual, nondisabled, Christian males being counted as worthy.

Those of us in the disability community who have been around for lots of years have fought long and hard to become recognized as just as validly human in the eyes of society as other citizens. We have made great strides in some areas. Disabled children now have the right to an education. Disabled citizens have the right to health care and the right to live in the least restrictive setting. The list goes on. BUT… 11-9… now what?

What we know today is we have Donald Trump as our next President. He will become the most powerful person in our country. He has made no apologies for being non-inclusive. He has very articulately shared his divisive viewpoints with all of us many times over. Collectively, we knew what he stood for and collectively, with our electoral process in place we voted him in.

Many things going forward will be affected. Only time will tell how much and in what ways. Even though we cannot predict just how our community will be affected many of us have first hand experience of the impact on our lives when those in position of power negate our value as human beings. The reason the disability community is grieving today is not because our favored candidate lost an election. It is because our hard won status to be counted as an equal human being has died. Collectively we mourn society’s pronouncement of our unimportance, our non-being status, our less-than-human nature.

Our mourning is real. It is palpable. We are in the throws of it. Our futures and the very lives we live everyday are at stake. We go to bed scared and wake up afraid. We cry together. We hold one another close. We have each other. Together we will face the future, whatever that may be, knowing the sun will come up every morning even when we cannot see it.

A new day will dawn. Together we will regroup and go forward, arm in arm, holding on to our dignity, believing in our own intrinsic value and human worthiness. And on those dark days when you feel beaten down, know I will hold onto your hope for you. Likewise, I will need you to hold onto my hope for me during my times of bleakness, until I can once again pick up that hope and walk forward. This is how we will be stronger together. It is different than what we hoped for, but we will find our way. Each one of us matters. We will need to live through bigotry, hatred and misogyny. We will hold each other up because in the end love always trump hate.

tear

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.

Origninally written for and published by Ollibean on November 11, 2016.
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