Thursday, November 12, 2015

Aspie Book Club Presents: NeuroTribes, by Steve Silberman

Hello all and welcome to a new installment of Aspie Book Club! Now, for those of you who have been following my blog from day one, you may remember a section I started back then with this name dedicated to profiling any and all books I come across on the subject of Neurodiversity and Autism. Well, it has been a few years since my last (and only) Aspie Book Club entry but fear not dear readers, for the section has returned from the dead! This time, I'll be focussing on a book which only came out a few months ago called NeuroTribes, by Steve Silberman of Wired Magazine.

NeuroTribes chronicles the history of both Autism and the various movements and initiatives which have risen around it throughout history. It is at once both sobering and inspiring, and though long-winded at times, it succeeds in presenting a chronicle of those on the spectrum throughout the ages, along with the responses of the scientific community to their existence. It is at times joyous and hopeful, at others dark and touching, but one thing it always is is powerful. I have always been a believer in Neurodiversity, but like most people I haven't always been aware of the history behind it all. Reading through NeuroTribes, I felt as though I was for the first time coming face to face with the history of my own people.

I can safely say, dear reader, that there were moments where I wept while reading this book, and yet others when I cheered proudly and defiantly for even the smallest victories achieved by autistics, aspies and those who advocated on our behalf. Perhaps one of the most poignant moments for me while reading this book occurred while I was working through the chapter on Hans Asperger. Silberman devotes much of the early part of his book to discussing Asperger's work with the children the author would come to refer to as “Asperger's lost tribe,” and this is done for good reason, as the good professor was working and discovering Autism during one of the darkest chapters of human history; the Nazi eugenics programs of the 1930s and 40s. In many way ways, Hans Asperger was to the Neurodivergent community what Oscar Schindler was to the Jews; a hero who saved whoever he could from the tyrannical hands of Hitler's National Socialist party.

The book also gets far darker, discussing the pathologizing of Autism by Leo Kanner in 1940s America, the cruel behaviourist experiments on autistics during the 60s and 70s and the rise of the anti-vaccination movement as a means of curing Autism during the 80s-2000s. It should be noted, however, that the night is darkest just before the dawn, and Silberman's book is no exception. The final chapters of his work illustrate the rise of the concept of Neurodiversity through such important figures as Temple Grandin and others who helped popularize the idea that autistics are not 'broken,' they merely run a different human operating system. As a result, this book is an emotional rollercoaster and an absolute page turner because of it.

NeuroTribes, by Steve Silberman, is therefore one of the best books I've ever read on the history of Autism and Neurodiversity. It was not only thoughtful and thought-provoking, but it also treated its material and the people being discussed with a sense of hope, love and respect that is so hard to find among many others who write about autism. Here is a book that, rather than portraying autism as a tragedy for parents and caregivers, tells the untold story of autistics themselves. While it's an emotional and at-times difficult book to read because of it, it is also powerful and optimistic. More than any other book I've read on the subject, this one made me feel like I'd come home. It was the story of my neurotribe, writ large for the first time. Silberman's book is a masterpiece, and has the potential to serve as the perfect manifesto for Neurodiversity as a whole.

Well done Steve! (Can I call you Steve? Mr. Silberman?)
Yours in Diversity,

Adam Michael

Sunday, November 1, 2015

Sensory Overload: A Survivor's Story

Today, I'd like to take a break from the political and activist sides of this blog and focus on something more practical. I'm sure we are all quite familiar right now with the stereotype that autistic individuals lack empathy and appear detached from their environment in any but the most specific (and often ritualized) ways. While there is no denying that this may appear to and even be true for some, I would like to share today my own personal experience in this regard. You see, far from lacking empathy and attachment, I have found that quite the opposite is true. In fact, I would argue that those of us on the spectrum feel and sense others and the environment TOO MUCH.

I'm going to tell you a story that will hopefully explain this a little better. I've said it before, but I'm a manager at a small Canadian telecom company who works in a retail kiosk environment during my day job. We happen to be the busiest and most profitable store in the company, so naturally such an environment is often stressful and busy. I won't say I have an easy time with that normally as an aspie; the amount of people, the multitasking and constant demands on my attention tend to get to me fairly easily, but after long enough working in people-oriented jobs, I've developed coping mechanisms for it. The other day, however, pushed the limits of my tolerance. We were crazy non-stop busy, the customers were getting grumpy from waiting in line, we were short staffed and I had to accommodate breaks for my team, and to make matters worse, we had received a massive product shipment that I had to work through receiving! My coping mechanisms were pushed to the breaking point and I could feel the spectre of sensory overload setting in. My anxiety was building, and all I wanted to do was turn inward and curl up in a quiet ball with not a sound to be heard. Were it not for the fact that I had to make frequent trips to our back room to sort and put away the already received equipment, I don't know how I would have done it. My stress and anxiety was that crippling.

Now, imagine that level of stress. That “go away world and leave me alone!” level of overwhelming anxiety developing over something as simple as caring too greatly for someone, or being unsure how to respond to the affection of other people, and you start to have a rough idea of what it must be like for those autistics and aspies who are more severely on the spectrum. Simply put, the appearance of emotional detachment doesn't necessarily mean these individuals are emotionally detached; it can be representative of feeling and perceiving the environment in too much detail, and needing to take a step back from it to process things. As another example of this, my sister loves blasting music loudly in the car while either one of us is driving. When it's in my car, however, I find it so grating when she does it! While she may enthusiastically hear her favourite song drowning out her other senses and wrapping her in a familiar melody, I hear each note as a punctured audio nail being driven into my conscious mind with the stabbing and piercing clarity interfering with my thought processes and cognitive ability. It is simply too much!

I'm not going to say that there isn't a certain amount of difficulty understanding emotion inherent in ASD; far from it. I myself have difficulty reading the subtle differences in facial expression between, for example, angry and serious, and it usually takes my brain a split second to register sarcasm, sudden emotional changes, or big, tragic events. Even so, however, I wouldn't call this a lack of empathy. In fact, I can assure you that my empathy for others and capacity for love each run quite deep. If anything, my emotions run hot and strong right beneath the surface of my being. What Neurotypical society interprets as a lack of empathy is really just the obliviousness towards emotional nuance in others' outward reactions that comes with a place on the Autism Spectrum, while the environmental detachment is simply a coping mechanism for the taxing sensory experiences overwhelming our highly attuned nervous systems. In either case, it isn't due to a lack of ability to feel; its that those of us with ASD are so acutely aware and sensitive that even a minor sensory experience such as a scratchy shirt can be pure and utter hell.

All of us, whether Neurotypical or otherwise, experience sensory and emotional overload, and none of us are good at reading every situation perfectly. The key isn't dismissing anyone as being incapable of something because of it; rather, we should be encouraging and teaching methods of coping with the crazy realities of the world. Next time you meet someone who seems to be hiding in their own mental world, remember; it probably isn't because they don't want to come out and talk, they just find every day life overwhelming and need to recharge and re-center themselves. This is all part of learning how to speak the languages of other neurotribes, and it is something which must happen if we are to move forward as a species.

As always, yours in diversity,

Adam Michael