Thursday, October 22, 2015

Neurotribes Made Me Emotional, And That's A Good Thing

I may be autistic, but I'll be the first to say there's a lot I don't know about autism. My recent forays into learning about autism and the wider autism community have shown me that there's a ton of things that explain a lot about myself (my quirky habits, my abhorrence of change, my ability to get emotionally overwhelmed) and how much I have yet to know about autism as a whole. The more I explore on the Internet, in books, and in relating to other autistic people, the more I get invested in the subject.

So when a friend told me she attended a TED Talk conference where one of the speakers talked about autism, I was beyond intrigued. For months I waited impatiently for the talk to make its way online and when it was finally uploaded, I found something incredibly unique - someone who looked into how autism was "discovered" and how it came to be perceived.


Watching this got me intrigued. There's plenty of accounts and blogs detailing about what it's like to be autistic,  what it's like to parent an autistic kid, and the many scientific studies into what autism actually is, but not really much of a history of autism. I probably mentioned here before how I'm a history aficionado so of course this quickly became a favorite video. And when I found out this presenter, science reporter Steve Silberman, was coming out with a book on autism's history, I pre-ordered it as fast as I could. In a world where autism is discussed in either cold clinical terms or overwhelming emotional rhetoric, this posed an alternative view I desperately wanted to see - an objective look at autism by examining its historical roots.


Despite receiving my copy of Neurotribes: The Legacy of Autism and The Future of Neurodiversity about a week after it's release (free shipping on Amazon Prime-less accounts annoyingly delays your delivery five to eight business days and I have to budget carefully as a social worker) I devoured it in about two days. This should be surprising given that it's thick at over 500 pages, but it was written in such plain English that it was easy to understand. It's full of "great men" profiles as it seems autism's history seemed to revolve around big personalities in the field but there's also profiles of real people who live with autism on a daily basis. And when I was done, I had a million and one questions about what I had just read. And if a history book can leave me with a million and one questions, it's a damn good book.

What I did not expect is how much it hit me emotionally. I spent my life feeling alone in my autism. The doctors who diagnosed me told my parents they weren't sure if I'd have an independent life. There were not a lot of helpful resources or services that would give me an autistic community of my own. And Neurotribes showed me that was a pretty intentional move. Downright ignoring Hans Aspergers' theories of commonality of autism occurrence and need for inclusive services in favor of Leo Kanner's pathologized psychosis "life-destroying" model of autism made my condition something to be feared, and that it pushed me away from "normal folk". No wonder I was rarely invited over to play with other kids growing up - people were scared to deal with a girl as different as I was (although my meltdowns may have been a more salient reason for peer ostracism). Even with the '60s-'80s parent movement to make services more available and inclusive, there wasn't much of it that really addressed my sense of isolation and "otherness".

(That's not to say there wasn't any benefit from immersing in the non-autistic world. My parents got me as involved as they could in "normal" childhood activities and encouraged the people involved to be as understanding and inclusive as possible. I went to a mainstream summer camp with supportive counselors, I was active in my synagogue's youth groups, and took singing, cooking, and acting classes with my neurotypical peers. And through that I learned to socialize and get a sense of belonging in a way that I'm not sure I would've had if I was more isolated.)

After reading the book, I also found it amazing my parents always believed in me. Even with the movie "Rain Man" showcasing autism on a wide scale, my parents managed to not give into the panic accompanying the broadening diagnostic criteria of autism during the 1990s. My parents managed not to believe I was infected with something that would doom me for the rest of my life. And they certainly didn't buy into the fraudulent "vaccines cause autism" "study" of 1998. Maybe it's because my parents wanted to educate themselves about autism. Maybe it's because they kept up with Temple Grandin. Or maybe it's because, as my mom told me, my parents aren't people who run from or despair at challenges but rather believe all their kids deserve a good shot at life. Neurotribes showed me I am lucky indeed to have them. And that's not nothing in a world where autism is still described as a scary "epidemic" and something to be "fixed".

But most importantly, Neurotribes taught me there is indeed strengths in autism that cannot be ignored. It's not a bad thing how one of Leo Kanner's patients could memorize hundreds of symphonies as a toddler or Hans Aspergers' kids showing incredible affinities for science or engineering. As much as I down myself for my anxiety socializing and difficulty managing my emotions, I can't help that I have an unique insight into history, politics, entertainment and social issues. My brother once told me that he admires how I see the world differently, and that means the world to me. And I've been fortunate that I've had teachers, peers, and friends who see that and encourage me in asserting myself. I'm working on appreciating that more.

I'm aware the criticism leveled at the book revolves around it "glossing over" the difficulties autism presents in favor of highlighting its positive attributes. I was lucky enough to interview Silberman for a San Francisco-based zine I write for (seriously, check it out) and he's the first person to say that autism is "fucking hard". He accurately points out how natural it is to people to look at autism and immediately notice its challenges before anything else. But he says hope is key because no one can accurately predict how an autistic person will turn out. To paraphrase him, growth is always possible even in moments of struggling and society should give autistic people that benefit of the doubt. And as someone who often feels like my life is a never-ending struggle, it meant a lot to hear Silberman say that. Not many people would even think that let alone say it out loud.

So from the bottom of my heart, I thank Steve Silberman for writing Neurotribes. It not only gave me a sense of the history of my condition but a real evaluation of myself and my life. It made me truly appreciate my lot in life and solidified my commitment to ensuring other people have the same benefits I had. And given it hit the NY Times bestseller list, I'm excited that a lot of people are interested in expanding their views on autism beyond its deficits. It's giving me hope that people will see autism as both complex and capable of positive things. And with that, I hope Neurotribes will let people accept me for me.


2 comments:

  1. I'm reading it right now and it's amazing. Getting a sense of our history like that, and seeing the pieces all come together... I feel profoundly changed.

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