Category Archives: Activism/Advocacy

Uniquely Human Neurotribe

This past summer two new autism books were released within days of each other. Each, of it’s own accord, is a game changer if readership becomes large enough. Together the two books could serve to alter the course of autism history in terms of who is given the stage to tell the autistic story.

Neurotribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman does exactly what the title says – lays out lots of history. There are so many interesting parts that I never knew existed that have impacted what we believe we know about autism. Even though the book is quite large – over 500 pages – there are lots of parts that got left out.

I am hoping for a second volume, perhaps titled something like Neurotribes; The Left Outs because through all of the history of autism there have been the many factions of “left outs” when it comes to autistics. Historically, all autistics have been left out of humanity – not considered to be human beings as so succinctly put by Ivar Lovaas in an article he wrote for Psychology Today.

He [Lovaas] explained to Psychology Today, “You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense – they have hair, a nose, and a mouth – but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.’

Neurotribes, page 285

Understanding the history of the shaping of societal attitudes is important. It is the reason for where we are today. At this point in time society generally regards parents of autistic children and professionals serving autistic children to be the experts about autistic life. Autistic adults are disregarded. We have been and continue to be told we are either too autistic to possibly know or not autistic enough to possibly know what it means to be autistic. It is time – past time – to change this dynamic!

The trouble is that even though autistic people have been speaking, writing, making films, screaming, politely talking, arguing, pulling out hair (self and others) and employing all behaviors possible to get the world to hear very basic things about our own autistic selves such as:

  • we already are human beings
  • we have feelings
  • we want friends
  • we have empathy
  • etc, etc, etc.

– even though numerous autistic adults have been saying these things for ever so long we are NOT heard simply because society has adopted the view that autistic people cannot and do not have the authority to reliably speak on topics having to do with anything autism related, including living the autistic life.

Enter Uniquely Human: A Different Way of Seeing Autism by Barry Prizant! If you are autistic and read this book you will immediately recognize the word “different” in the title is meant for everyone NOT autistic. Those in our tribe (along with those rare humans who stand with us) already have known what others will come to tout as “a different way of seeing autism” our whole lives. Besides knowing it, we have also been saying it over and over and over for more than forever it seems already! But society has not heard in a big enough way to make an inroad, to make a difference in the way autistics are thought to be, and as a result, treated by all factions of our modern society.

Here is what I posted on Amazon for Uniquely Human on September 2, 2015:

Reading this book was like a breath of fresh air! The author explains autistic reality for what it largely is – employing solutions to make living in a world mismatched to our neurology possible. The reader has ample opportunity to shift his own place from which he views autistic people.

Societal norms have determined that an autistic life is one lived from the view down under, meaning the majority norm is the unspoken attainment of passing that autistics are meant to strive towards. Professionals often congratulate themselves when they have taught their autistic clients enough skills so they can appear “indistinguishable from their peers” regardless of the price paid by the autistic to maintain this indistinguishability.

Thank you Barry Prizant for pushing the envelope towards that future day when society might view autistic people as sharing their world (rather than in our own world, often othered and living down under society’s “normal”). Thank you most for already seeing us in that way.

Having Uniquely Human hit the shelves along with Neurotribes may have the impetus to change the status quo. Because neither author is autistic they will automatically be publicly heard over anyone autistic and over a collective of autistic voices when it comes to the autistic life. For once – this is a good thing! It is good because both of these authors say the things autistics have been saying for a long time already. I am hoping these two books pave the way for society to collectively begin to see that autistics really do know about living the autistic life – that autistics are the experts on what it means to be autistic.

Steve and Barry – Please team up, get out there and turn the tide. Thank you so very much for counting us already human and for understanding why the rest of the world most often does not. As autistics, we cannot change this status quo. Because you are NOT autistic you have that chance. Do us proud.

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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 September 9, 2015
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Autism and Changing Classroom Strategies

The field of autism is very new – not even 100 years old yet! This means we are constantly learning new things. It also means that those of us in the field of autism will likely need to change the way we deliver help to those who seek it and change the way we teach our students. It has happened to me and to most of my colleagues in the field.

We now know that what works for most children to learn does not always work for autistic children. In fact, it can be detrimental to their learning. Here are two examples:

  • Requiring children to look at you when you are speaking to them
    ~
    For most children this will allow them to better attend to what you are saying because the act of looking while listening often gives you their undivided attention.

    For many autistic children looking at people speaking to them is problematic. Many autistic people will tell you eye contact is painful. Even when it is not downright painful, eye contact can be a problem for many autistics in that the information picked up is too intense, which can then trigger shut down.

    Whether painful or too intense, eye contact with an adult speaking to an autistic child will not insure that child’s undivided attention. In fact, demanding eye contact of an autistic will most likely be counter-productive to your goal of having them take in the information you are saying to them.

  • Requiring children to stop moving about when you are speaking to them or when you want them to do seat work at school
    ~
    Most children are able to better concentrate on the task at hand if they have still bodies.

    For autistic children the opposite can be true for a variety of reasons. For some, processing information – this includes thinking – can only happen when physical movement of the body occurs. Thinking is neurological movement of ideas and facts in the brain. Autistic wiring means that sometimes it takes physical body movement to spur on the neurological thinking movement necessary to allow academic completion of tasks.

    Many autistic children employ a repetitive movement such as flapping of the hands. We now know that hand-flapping can be a tool to keep the sensory system of autistics better regulated. Many report the calming effects actually allow them to be part of the world around them. Others report that hand-flapping allows excess emotion to be drained out of the body which avoids shut down from overwhelming physical sensations that intense emotions can bring to an autistic body.

    Whether regulating, calming or avoiding shutdown, hand-flapping or another repetitive movement (sometimes called stims) for many autistic students, is their ticket to be able to concentrate on the task at hand. Having a quiet body or quiet hands, while helpful for typical students, is often counterproductive for autistics when it comes to hearing instruction or concentrating on academic tasks during the school day.

Maya Angelou said that when we know better we do better. I think this is an important concept to apply to the changing field of autism. As we become better informed by the children who grew into adults and are now well able to communicate their perspectives from living in a body headed up by autistic neurology, we can throw out some of those ideas and practices we once thought were helpful.

Often times I see people in the field of autism hang onto the way they always thought or the way they always did things. Change is difficult. Sometimes people get into dichotomous right/wrong arguments over things such as eye contact and hand-flapping.

I get this. For me, if I learn something new that changes what I do to make things better for children today I also think, “What might have happened for Tellis or Maddie or Carlos or Jack if only I had known?” It is hard to entertain having been wrong, especially when you know it may have negatively affected the lives of children. I think this is why some people fight so hard to prove their old thinking and old ways are right and the new ideas or new information is wrong. And yet, it often isn’t a matter of right or wrong, but instead, a matter of becoming better informed over time.

I would like to encourage all of us who feel badly or are embarrassed about what we believed about autism or about the strategies we may have tried in the past to remember to be kind to ourselves. Most of us have done the best we could with the autism information we knew at the time. Remember, relatively speaking, the field of autism is new, being less than 100 years old. Thus, we can expect to shift our thinking and change our practice strategies based on new information.

As long as we continue to update our information along with seeking out and learning from the experts – those who live the autistic life – we can know that as we learn, discover and grow we can update our teaching strategies, improve our service delivery and make better progress on behalf of those we serve who live with autism. As teachers and practitioners we will become better and better interfacing with, helping and teaching our autistic students. Together, with autistics informing us as we go, the world can become a better place for us all.

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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 August 8, 2015
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