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.
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– 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 (more sarcasm because we are thought to be only a compilation of our “behaviors” by ever so many people) 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.
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. (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.
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I absolutely agree with everything you’ve written. However, I don’t have to like it. You know?
I have nothing against either of these gentlemen and in fact want their books to do amazingly well. But it’s still frustrating – still infuriating, actually – that I am seen as somehow inferior to someone who doesn’t have my brain chemistry simply because I have that brain chemistry. Would we ask white people what black life is like? Of course not. So why are NTs seen as the experts on who we are? I was “normal” enough to get a Juris Doctor; why am I not “normal” enough to tell you how I see the world and have you believe me?
Let me be clear: my frustration is with society, not anyone involved in these books. I devoutly hope you’re right and these can pave the way for more autistic authors to be seen as something other than self-narrating zoo exhibits.
[…] Frith could not corroborate this term was ever used by Aspergers himself. As Judy Endow states in her review of the book, this could be Book One There were many “left […]
Thank you, Judy, for your insights. I’m reading NeuroTribes, a superb book. Also reading Uta Frith’s (one and only) English translation of Dr. Asperger’s paper, to which Steve Silberman alludes. I somehow missed out Barry Prizant’s book – having read your article, I must get that one, too. There are fewer issues I feel stronger about than accepting people’s differences.
Judy,
Thanks for the wonderful post!! You may be happy to know that Steve and I already have spoken, are in touch on a reglar basis, and have formed an informal “alliance”. I love Neurotribes and the feelng is mutual about Uniquely Human, and that goes back to last Spring when we shared advanced copies of our books. I am leaving for California tomorrow to do a workshop and I have seized the opportunity to contact Steve for a lunch meeting to discuss further, so you post is perfect timing to encourage us to keep movin’ on.
Others are already seeing the connection – Nature magazine called the books “serendipitous companions” and on Amazon, people who buy Uniquely Human are most likely to buy Steve’s and vice-versa.
I agree that there may be a great opportunity here, and I hope we can do you proud.
Thanks for all you wonderful insights and support, and keep teaching us!!
Barry