Category Archives: Activism/Advocacy

Autistically Thriving!

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

Endow_Cover_05-28-19_FINAL_FRONTCOVER
Autistically Thriving

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

 Based on Autistic Neurology

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

AUTISTICALLY THRIVING INTRODUCTION

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

ASD Diagnostic Criteria

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

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

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

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

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

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

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

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

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

CLICK HERE TO ORDER

AUTISTICALLY THRIVING BACK COVER TESTIMONIALS

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

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

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

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

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

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

Endow_Cover_05-28-19_FINAL_FRONTCOVERCLICK HERE TO ORDER

BOOKS  BY JUDY ENDOW

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

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

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

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

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

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

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

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

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?

16649187_10154387753618177_660809761205358183_n

BOOKS AND DVD BY JUDY ENDOW

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

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

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

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

Endow, J. (2009). The Power of Words: How we think about people with autism spectrum disorders matters! Shawnee Mission, KS: AAPC Publishing.

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

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

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

Originally written for and published by Ollibean on March 16, 2017.
Click here to comment.

 

 

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 AND DVD BY JUDY ENDOW

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

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

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

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

Endow, J. (2009). The Power of Words: How we think about people with autism spectrum disorders matters! Shawnee Mission, KS: AAPC Publishing.

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

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

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

Origninally written for and published by Ollibean on November 11, 2016.
Please leave comments here.

Disability Policy: Clinton Versus Trump

In a few weeks we will have elected a new President of the United States. Many of us get our information from watching TV. The trouble with this is we only get the information the TV decides is news worthy. Unfortunately, most things concerning disability are not newsworthy. This means that rather than seeing a candidate’s disability policy on the evening news we are more likely to see a candidate’s latest purported scandal whether it is about deleted emails or admitted past sexual abuse. While these things can be informative, I think it is helpful to also understand where the two major candidates stand on issues directly affecting the disability community. Here is some of that information put side by side for comparison.

Specific Disability Plans

Trump: There is nothing specific on Trump’s website regarding any plans for any disability in particular. However, I do remember a few months back there was at least one line that said he wanted to expand mental health coverage. I believe it was in reference to veterans.

Clinton: On Clinton’s website a comprehensive plan for autism and for mental health is outlined in detail along with her plan for combating HIV/AIDS both in the United States and abroad.

The autism plan is quite comprehensive covering many areas such as expansions in early screening and insurance coverage. Additionally, several life span issues affecting autistics are addressed including plans for targeting bullying in schools, getting assistive technology to those who need it, life span caregiving for those who need it along with community living options for adults. I have just learned this morning that part of the research she is in favor of funding includes genome mapping which, if realized, will undoubtedly lead to less autistic people being born.

Her mental health plan addresses areas of earlier diagnosis and treatment, expanded insurance coverage and brain research. She emphasizes treating the whole person in an integrated fashion.

Health Insurance and Medicaid

Trump: He plans to repeal Obamacare, going back to insurance coverage as we had before Obamacare became law. In the free market health insurance plans denial of coverage for pre-existing conditions would come back into play. Additionally, the coverage of adult children to age 26 that the Affordable Care Act brought about for us all goes away leaving many of the nations young adults uninsured. Workplaces would not have to offer health insurance to employees.

Insurers would be free to offer any plan of their choosing in any state of their choosing. All health insurance premiums would be tax deductible. His plan to reduce prescription drug costs is to get the drugs from other countries where they are cheaper, but may not meet the quality and standards of our country. He supports tax-free health savings accounts.

As for Medicaid, Trump’s plan is to turn it over to the states through block grants allowing each state to use the money as they see fit to provide some or all of health care costs to Medicaid eligible individuals.

Clinton: She sees affordable healthcare as a basic human right and would expand the Affordable Care Act (Obamacare) and apply fixes to the parts that are not currently working well. Her goal is universal health coverage for all Americans. At this time she plans to leave Medicaid intact and expand it’s coverage to include all low-income citizens.

Clinton’s plan is to reduce co-pays and deductibles. She further plans to reduce prescription drug costs through bargaining. Mental health treatment is slated to become part of ordinary healthcare. A specific autism plan includes increased access to services across the lifespan.

Community Living/Medicaid Waivers

Note: In the past children with complex or severe medical conditions were often institutionalized. Today it is more common for families to receive a variety of support services that allow their children to remain home while receiving the medical care they need rather than being placed in institutions. The funding for these services comes through Medicaid Wavers, which turns out to be less costly than institutionalization.

Trump: No record can be found of Trump ever addressing this issue specifically. However, he has stated that mental institution and mental health programs in this country need to be reformed without giving any details on how he proposes to do so.

Clinton: There are numerous plans on Clinton’s part which include

~~ Supporting Developmentally Disabled Act along with creating the Autism Plan that both allow for or expand support services at home for all children with disabilities, especially support services to caregivers

~~ Strongly supporting the Olmstead decision that allows individuals with disabilities to live in community settings and has a plan to ensure each state is in accordance with carrying out this provision

~~ Plan for expanded support provided to individuals that make it possible for them to live in a variety of community settings

In conclusion, it is helpful to look at these candidate’s websites and to listen to their campaign speeches. It is also important to me to see how they have treated people with disabilities over the course of their own life and during the course of this presidential campaign.

While Trump has only discussed disability in reference to veterans and has publically mocked a news reporter with a disability, Clinton has spent her life working on behalf of individuals with disabilities. She has outlined plans to support people with disabilities to live in integrated community settings, to improve employment with fair wage opportunities and to provide tax relief to caregivers. Clinton has been the only candidate to give an entire campaign speech on disability rights. She is the only candidate to articulate both a comprehensive plan for mental health and a comprehensive plan for autism.

While it is good that Trump is concerned about disability issues for veterans, it is much more inclusive that Clinton is concerned about disability issues for a much wider range of people affected by disability as evidenced by thought out plans including a way to pay for them.

For me personally, even though I am well able to compare and contrast where the candidates land on issues I also have a personal question I ask of myself before voting. As President, who will put each of us closer to the reality of life, liberty and the pursuit of happiness – Trump or Clinton? For too many disabled people alive today this has not ever been reality.

c-v-t

BOOKS AND DVD BY JUDY ENDOW

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

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

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

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

Endow, J. (2009). The Power of Words: How we think about people with autism spectrum disorders matters! Shawnee Mission, KS: AAPC Publishing.

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

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

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

Originally written for and published by Ollibean on October 25, 2016.
Click here to comment.