switched on

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{image is a photo of John and me after lunch last week. To find out why we’re laughing, see the photo at the end of the post.}

Last week, I had lunch with one of my all-time favorite human beings, John Elder Robison. I always feel so blessed to have time with John. In all of the years that I’ve known him, he still makes me think like no one else does.

The first time I met him, I came home from our dinner looking like a deer in headlights. “Are you okay?” Luau asked (a number of times). I told him that I was far more than okay. I was changed. I just needed some time to process.

John’s new book, Switched On, chronicling his experience with TMS, comes out this week. John asked me what I recalled from our early conversations, nearly eight years ago, when he had just begun the treatments.

“More than anything,” I said, I remember how rattled you were by it. You cried telling me about your experience and I was deeply moved by how hard it was for you.”

I told him that I remembered him expressing feeling lost and very lonely, isolated. I reminded him that he had said that he felt like Charlie from Flowers for Algernon and that, while all these doctors had a stake in the outcome of the TMS, he was the only one who was living it.

I didn’t tell him that I’d picked up a copy of Flowers for Algernon the very next day and sobbed as I reread it.

I told him that I remembered asking him if he had guidance and care through the process, and him telling me that no one could guide him because no one could really know what it felt like to be him. He was on his own to process the dramatic changes taking place in his life and, from what he shared at the time, it was desperately overwhelming.

“You had been deeply upset about the shift,” I said.

“While on one hand you described what you called the superpower of being able to see inside people and read their emotions (which was a double-edged sword because you were overwhelmed by all the emotion coming at you), you were distraught about how it seemed to be changing your entire paradigm – shaking the foundation of the intense interest in machines that had made you so successful.

You were very worried about where it would lead you and how you might have to rebuild everything you knew.”

I told him that I remembered him talking about the gifts inherent in autism and my initial confusion about how there could possibly be gifts in my daughter’s disability.

I had mentioned that my girl, who had only echolalic language at the time, had surprised us all by spelling a word backward and how he had talked about the fact that autistic people often hone skills like that over many years – “a constant sharpening of the mental knife” he had called it.

He’d suggested that perhaps it was a factor of mental capacity being allocated differently from the norm — unused social energy transformed into extra capacity for focus on subjects of interest.

He had wondered aloud what would happen if kids like mine had TMS – what the cost would be. What might we – not just them, but all of us as a society – lose, he had asked, were they to be fundamentally changed in a way that would stop that sharpening of the knife, that might thwart progress and innovation. The exercise was purely an intellectual one as there were and are myriad reasons why it would be desperately inappropriate and unethical, not to mention unfathomably dangerous, to experiment on our children’s brains.

Nonetheless, it was a profound question and one that served as a seed for the evolution of my subscription to the concept of neurodiversity and away from the idea of a “cure” for my girl’s differences.

We left off with the questions, I told him, rather than any answers. “What would we/ they lose?” was the biggest question of all.

More than anything, I told John, what I remember was wishing that I could help somehow – that I could have made him feel less alone, even while knowing that he was right: he was alone in understanding what was happening to him.

John asked, “Did it give you hope, then, or scare you?”

I told him that the truth was both. More than anything, I said, it made me start to think very differently about autism. That moment marked the beginning of my understanding that it could be both a gift and a disability at the same time. And that we might be on a path to being able to mitigate the disability without losing the gifts, even if we weren’t there yet.

The question was and is, of course, how does one discern the difference? What if the gift is part of the disability and the disability is part of the gift? What if what appears to be a disability in one setting IS a gift in another? How do we know until it plays out on the stage of a fully lived life?

We don’t.

John’s book will undoubtedly be controversial and there will be a lot to talk about. But I believe that his story is an important one to read and then consider in context. John forces us to think about how we view disability, both from the inside out and from the outside looking in. Through the telling of his story, he shows us the effects of ableism and what may just be the extraordinarily high cost of trying to “fix” what we’re convinced is “wrong” with ourselves and our children. And, while doing so, he heartily entertains us. Because among so many other remarkable things, John is a natural born story teller.

There is no single defining narrative of autism and I am more than wary of anyone who claims to present one. Rather, the story of autism is a tapestry made from millions of individual perspectives – some strikingly similar, some worlds apart. I am a firm believer that John’s journey is an invaluable contribution to that ever-growing, beautiful tapestry.

Order the book here.

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{image is our first attempt to take a selfie. Now here’s the thing. John is very tall. I am very, very not tall. So one might think that we would have given the camera to the taller of the two of us to hold. Clearly, one would be wrong. Poor John was trying to squat down low enough to be in the frame. He is nothing if not a good sport and I am nothing if not a terrible selfie taker which is why we were laughing in the next one we took. You’re welcome.}

 

8 thoughts on “switched on

  1. So interesting. I just ordered the book from the library (I don’t buy unless I know I will reread…). Jess, what does John think about Asperger’s being taken off the spectrum?

  2. Johns first book-Look me in the eye-was the one that confirmed I was not crazy for thinking something was off with our son,it reassured me that he was not broken just different,and that with guidance,patience,and a willing ear to listen to those who have and are walking this path ahead of him,and us-his family,with all that-somehow we can make it work.

  3. jess, your evolving understanding of neurodiversity is precisely what the world needs now. i ordered john’ book. i am emailing you mine (in press) along with a few big ideas on what we all can do now. thank you for being exactly you. love gifted and disabled b

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