Monday, October 5, 2015

NeuroTribes and the Proper Use of 'Neurodiversity'

Shannon Des Roches Rosa

Steve Silberman's NeuroTribes is a large, densely packed book about autism's past, present, and future. I found myself overwhelmed by the amount of information contained in each individual paragraph, in considering how much research and synthesis it took to create those paragraphs -- and in knowing that NeuroTribes's information matters so much, while acknowledging my kind of brain can't possibly retain it all. 

It doesn't surprise me, then, when other people have trouble remembering every important point in NeuroTribes, because the book is an 500-page information tsunami. Due to those info overload risks, however, some of NeuroTribes's themes need to be repeated more than once or twice for people to get them right. 

One theme that needs more emphasis is NeuroTribes' clarification about neurodiversity: The term is not limited to autistic people who communicate independently, or indeed only to autistic people. 

Neurodiversity is the full range of human neurological experiences. That means you, your loved ones, and every other person on this planet is included in neurodiversity. And that means the term 'neurodiversity' is not only not a synonym for Asperger's syndrome, it is also not a synonym for all diagnosis-worthy brain wirings, be they bipolar, ADHD, dyslexia, clinical depression, OCD -- or, you know, autism. 

A Neurodiversity Symbol
source: Wikimedia Commons
[image: a rainbow-hued infinity symbol]
When you're referring to brains that need support and accommodation, then you're talking about neurodivergence, not merely neurodiversity. If you're talking about your own, or another's, individual differently-wired brain, then the relevant term is neurodivergent. (Nick Walker wrote a go-to terminology briefing on neurodiversity and related terms, and I recommend it to anyone compelled to write on the topic.)

It follows that the opposite of neurodivergent, which is 'neurotypical' or 'NT', also includes more than non-autistic people -- even though NT is sometimes used as shorthand by authors with definitive writings on neurodiversity. 

And that means that if you mean 'non-autistic,' you should say "non-autistic," and not "neurotypical," or "NT." (Another word for non-autistic is 'allistic,' and people I respect have good reasons for using allistic instead of non-autistic, but I like Mel Baggs's explanation as to why non-autistic is preferable.)

People also tend to mistakenly conflate the term 'neurodiversity' and the term 'neurodiversity movement.' According to Nick Walker, "The Neurodiversity Movement is a social justice movement that seeks civil rights, equality, respect, and full societal inclusion for the neurodivergent." So when people get pissy and write things like "neurodiversity is evil," they are not merely letting their ignorance flags fly on more than one frequency, they are not only being hateful -- they are also flat-out incorrect. (Quixotic self-appointed neurodiversity foes will get their own article, later.)

Back to NeuroTribes: Silberman mentions that the neurodiversity movement includes more than autistic people at least twice, once in the development of the very term 'neurodiversity,' based on the dynamics of InLv, an early autistic culture mailing list:
"People with dyslexia, ADHD, dyscalculia, and myriad other conditions (christened 'Cousins' in the early days of ANI [Autism Network International]) were also welcome to join the list. The collective ethos of InLv, said writer and list member Harvey Blume in the New York Times in 1997, was 'neurological pluralism.' "
And again in the introduction:
"One of the most promising developments since the publication of [Silberman's 2001 Wired article] “The Geek Syndrome” has been the emergence of the concept of neurodiversity: the notion that conditions like autism, dyslexia, and attention-deficit/hyperactivity disorder (ADHD) should be regarded as naturally occurring cognitive variations with distinctive strengths that have contributed to the evolution of technology and culture, rather than mere checklists of deficits and dysfunctions."
I am glad Mr. Silberman wrote those two passages. I am highlighting them in the hope that more 'cousins' witnessing the positive press swirling around NeuroTribes and the concept of neurodiversity will understand the neurodiversity movement includes them, even if they're not autistic.

As for using the proper terminology, well, that can take practice and, for some (ahem) the occasional refresher -- even for those to whom the terms personally apply. In most cases, if your obvious goal is to be welcoming and inclusive, and to highlight the needs of neurodivergent and autistic people and/or amplify such voices, folks usually will cut you slack. Unless the specifics of their own personality or neurodivergent nature requires them to address the misuse of terminology first and foremost. And that's OK, and to be expected, if we're truly working towards understanding and accepting neurodivergence and neurodiversity.

Thursday, September 3, 2015

How We Autistics Got to Here: Reviewing Steve Silberman's NeuroTribes

Patricia George-Zwicker

[Image: White woman with dark hair
wearing black-rimmed glasses, and
intently reading the book NeuroTribes.]
When Shannon Rosa contacted me and asked if I'd be interested in doing a guest review for Steve Silberman's highly anticipated book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, I excitedly and nervously said yes! Like so many others, I've been anxiously awaiting what I hoped would be a game changer for the Autism community and Autistic people.

I've visited many book stores over the years in search of credible information or stories by people like me, especially stories and information from Autistic women. I often left disappointed and frustrated by the lack of history, compassion, accuracy and the almost non-existent input from actual Autistics like myself, finding instead a minefield of cures, desperation, martyr parents, male-dominated information and -- said with respect -- books about or by one of the most well known Autistics, Temple Grandin.

I needed to know more. I needed to know how we Autistics got to here: more defined than we've ever been, and yet so divided as a tribe. What is the basis for so many of the preconceived notions about Autism? Surely our place in history, and among humankind, is not as damaged, abnormal, disposable, cure-needing people. So why are we still so overwhelmingly seen that way? These are just a few things I hoped NeuroTribes would address.

Mr. Silberman has more than exceeded that hope. NeuroTribes is like finally having set of autism encyclopedias -- in my own language -- to reference. So, how did Silberman, who is not Autistic, come to write this book?

In 2000, Silberman joined the first ever “Geek Cruise” to Alaska, on assignment for Wired Magazine. There he met Larry Wall, creator of Perl -- an open source programming language used around the world. When he requested to interview Larry further, it led to an invitation to Larry's home, and the disclosure that Wall had an Autistic daughter. A few months later, Silberman was working on a story highlighting Judy Estrin, a highly regarded female technologist in Silicon Valley -- and found she had an Autistic niece. Then a coffee shop talk with a friend about whether the two "geek" families' autistic children were a coincidence led to an interesting comment from a fellow patron -- there's an Autism epidemic in Silicon Valley, the person said. Silberman's curiosity was so piqued that it first led to his 2001 Wired article The Geek Syndrome, and now to his current book NeuroTribes.

This hasn't been a rush-to-print project; the depth of research put into NeuroTribes is obvious. I feel I can assure those with whom I share the Autism Spectrum -- knowing many will question why a NeuroTypical person is writing our history -- that Mr. Silberman is on our side. Reading the book will really help you to understand why: I'm looking at it as a bridge that will lead to more and more of us Autistics being published, and listened to, as the authors of our history. It's a step forward, if we take it.

[Image: The cover of the book
NeuroTribes, by Steve Silberman.]
Mr. Silberman has uncovered many personal stories of those thought to be Autistic, going back to the end of the 18th century. He clearly shows what I've always known: we've always been here! I especially enjoyed the first chapter, and meeting Henry Cavendish, the "Wizard of Clapham Common" and also the "Father of Electrical Theory," who was one hundred years ahead of his time. As Cavendish lacked the need or desire for promoting himself, many people haven't gotten to know, till now, this truly interesting character. I know many may relate, and wish they could have spent some time in his amazing world. Reading about how he put together and carried out the Cavendish Experiment in an attempt to weigh the earth's density is inspiring. What a mind! I'd read a book just about just him! 

As I read on, I saw more and more pieces of my life reflected back through the richly described stories of others, like a young boy named Harro L., who was one of the four prototype cases in Hans Asperger's post graduate thesis. Or Patsy, a young girl  taken in by a woman named Gina Alstadt -- who was married to Bruno Bettelheim. (Mr. Silberman describes Bettleheim as “the psychoanalytic equivalent of Dr. Oz.” which gave me a chuckle.)

I also felt the true weight of how my incorrect diagnosis of “manic depression” (BiPolar) at age 14 came at a huge cost, and never felt quite right anyway. Just as I never felt quite right in the world, nor sure where I fit in. That has also been the fate for countless of us Autistics with any sort of perceived mental difficulty or disorder, as is highlighted repeatedly in NeuroTribes.

I think many people reading this book will finally feel like I did, that they aren't alone. I experienced so many moments of self-recognition as I turned the pages -- what a gift. Being able to see autism history all laid out this way has helped me come to terms with many parts of the difficult past. In fact, through Silberman's expansive research we learn that -- by virtue of our unique but valid ways of communicating and differing minds and abilities -- Autistic people have literally given the world the ability to be as connected as we are with technology. Without us, NeuroTypical people would still be in the Dark Ages!!

At times, it was hard to make my way through NeuroTribes. I didn't expect to get mad so often. Mr. Silberman unfolds our dark history in ways that left me horrified -- by the scope of excessive cruelty, and complete lack of care towards autistic people like myself. Knowing some of the ways we are seen by others, and by society as a whole, still didn't prepare me for the sadness I felt when New York Times reporter Eliot Fremont-Smith talked about Autism as “an illness, a suicide really, of the soul.”

Throughout our history, any type of mental diagnosis almost always led to being institutionalized, with many vulnerable people treated worse than with animals. (It also led to our history being interwoven with that of Nazi eugenics.) We experienced electrical shocks, sterilizations, physical punishments as "teaching."  Silberman specifically covers the mistreatment of people with epilepsy, a condition many of us on the Spectrum experience. It was sobering to realize how people like me were treated, and what my fate would have been, not that long ago. Silberman doesn't sugarcoat those bad parts, and I appreciate that. 

Many who were leading the defining of autism seemed too blinded by their own spotlights or agendas (Kanner, Bettleheim, Lovaas). We see how painfully slow those personal agendas made any progress towards our current level of understanding, and how it didn't need to be that way.

I had to pause for thought a lot. I wrote Shannon at one point to vent about the things I was learning about Leo Kanner, the physician widely credited with being the first to define autism. I didn't expect to be so angry at him, or to find myself so enthralled by Hans Asperger -- who actually defined autism first. (I shudder to think where we would be without Mr. Asperger.)

The histories in NeuroTribes weren't and aren't all bad and hopeless, though. There are heroes (including Leo Kanner, what a complex character) and free thinkers all throughout the book. My anger was calmed and replaced by such admiration for the goodness and perseverance of many people we meet.

Two chapters in particular really touched me. “The Boy Who Loves Green Straws” gave me an intimate look into the lives of the Rosa Family, and my respect and affection for them greatly deepened. Having come full circle with some of my own beliefs and ideas, I know it's not easy to open up and expose yourself like that. Then “Pandora's Box” educated me about Lorna Wing, an English psychiatrist and physician who deserves far more recognition for her work advancing the acceptance and understanding of Autistic people and Autism. After reading about so many setbacks, to then be educated about Lorna's work really inspired me. I will continue to learn more about her as I grow in my own self advocacy and activism.

As I got deeper into NeuroTribes and kept going back over my notes, what stood out the most for me is how Silberman uncovered and compassionately laid out every bias society has about Autism and Autistic people. (A bias is defined as a "prejudice in favor of or against one thing, person, or group compared with another, usually in a way considered to be unfair.") I'd be reading along and suddenly yell, “Oh that's where people got that bias from!” I think exposing those biases is going to be a change catalyst for so many people. To understand where we get ableist views from, to see how our hurtful ideas are sometimes rooted in outright lies, gives opportunity for change and growth. I feel this will be one of the legacies the book leaves us with: a shift in word and action which leads to a more inclusive world for everyone.

I cried when I finished the book, for many reasons. Reading NeuroTribes was a journey of self-discovery, and I feel changed in a very good way for taking it. The book left me with the knowledge that even when it feels like we aren't making progress on behalf of autistic people and Neurodiversity, we truly are. That one person can make a difference, and that difference can be nurtured into something amazing that includes many.

I also feel such a debt of gratitude to all those who turned the tide in a better direction, especially The Autistic Self-Advocacy Network's 2007 campaign protesting NYU's Child Study Center's billboards about the "silent public health epidemic" of childhood mental illness. In David and Goliath fashion, the underdogs won and the billboards got taken down -- and I am left with a fierce feeling of pride and self worth as an Autistic human. I'm invigorated, and have a better understanding of the type of advocate I want to be.

I saw myself reflected back in this groundbreaking book, and it gave me the most complete picture of myself I've ever had. I don't care that Mr. Silberman -- who I saw call himself a “boring NT” on Twitter a few days ago -- helped give these feelings. Far too many other non-Autistics have taken too much away from us, for far too long. So I'm willing to accept and be grateful for what I see as Silberman's gift to the Autism community, and Autistic people everywhere: fostering a Neurodiverse society.

NeuroTribes's overall message is clear: Accepting Neurodiversity is key. Autistic people belong here. We make the world better and smarter in so many ways, and it literally wouldn't be the same, or as interesting, without us.