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.
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. To leave a comment at the end of this blog on the Ollibean site click here.