Tuesday, March 22, 2016

Switched On, and Autistic Feeling



Switched On has gone on sale today, and people are already reading and talking about it. The book tells the story of my participation in experiments where Harvard neuroscientists used high-powered magnetic energy to “switch on” the ability to see emotions in other people. One effect of the experiments was a “stepping up” of emotional response in me.
Want to hear me talk about it in my own words? Listen to me describe it on NPR “Here and Now.”  Skip forward to minute 8 if you want to hear my thoughts on this.
One of the things that is happening now is that some non-autistic people are commenting on the book in ways that are hurtful to me, and probably other autistics. I don’t think they mean to be hurtful, but they are. If I may, I’d like to illustrate what I mean.
One reviewer wrote: “Imagine you are a robot. A smart robot. Now imagine scientists flip a switch, and you suddenly have feelings.” That is the premise of a Star Trek episode, folks, but it’s not the premise of Switched On.
In my book I talk about how someone said I looked like a talking robot in a video long ago, and how hurt I was by that comment. Then, after TMS, I felt I could understand why they said that, because my face was very fixed and rigid. But here’s the thing: understanding did not make it any less hurtful to hear. If you were called a freak all through your childhood, how do you think that would feel to hear as an adult?
In Switched On, I explain in several different ways that we autistics have deep and strong feelings. What’s different about us is that we may not express them in the expected ways, and we may not have typical responses to things that might trigger an emotional response in you.
That is not robot behavior. That is autistic behavior. Read my book for the scientific studies that explored that, why it can be beneficial, and what it means. 
I’m not going to give away the whole book in one blog post but I would like to say this: Switched On is a story of expanding my ability to engage other people by turning on my ability to read their unspoken social cues. It’s not a story of me going from “having no feelings” to “having feelings.” That was Mister Spock on TV.
Make of my book what you will, but keep in mind that I – and every other autistic person you are likely to meet – has the same ability as you to feel things. In fact, as you will read, our emotions often run deeper and longer than those of non autistics. So please be mindful of what you say. Words do hurt.
Turning on the ability to read other people is a remarkable achievement that strikes at a central feature of disability for many autistics. For many of us, the most painful thing we live with is social isolation. For too many of us, the pain is overwhelming, and we turn to suicide. Did you know the rate of suicide for bright autistic teens is over nine times that for the general population? So it’s no laughing matter.
The autism spectrum is very broad. Some autistics are pretty good readers of other people. Others (like me) are very poor indeed. That was what sparked my interest in the study. I saw a chance to maybe get past something that had caused me lots of pain and loneliness for 50 years. If you’d lived with that ache all your life, and saw a chance to escape it, would you take it?
Not every autistic person would want a therapy like this, should it become widely available. Not everyone wants TMS or other depression treatment. That is their right (to choose.) For others, it can be life changing or life saving.
Best wishes, and enjoy the story.
John Elder Robison

19 comments:

Chris Buchanan said...

If you had it to do over again, would you undergo the treatment? Thank you so much for sharing your insight!

forsythia said...

Can't wait to read your latest book. I've learned so much from your other books.

alison hodge said...

I just listened to the shorter version of the NPR interview. It was very moving. I thank you from the bottom of my very outwardly emotional heart for all the wonderful work you have done, and continue to do. Feeling everything has never been a problem for me. If anything it's how overwhelming those feelings can be that is difficult. But it is also a blessing. I'm glad to hear that you've been able to experience those feelings, however painful, for yourself. Megna is right, you don't get to pick and choose the ones you feel and the ones you don't. It's more of a floodgate - it's either open or closed. Open is a lot riskier and more painful, but it's also where the joy is! I'm so grateful for all of the other insights you offer in your book 'Look me in the eye' which I've been reading for a grad course. I'm also looking forward to this latest book, and to hearing you speak at the MAAPS conference in a couple of weeks. Thank you :)

Bethimar said...

I was at the Carnegie Lecture Hall in Pittsburgh last night for your talk with my partner and his two sons (7 and 9). The older kid has been talking nonstop about how he wishes you knew that the bullies were wrong about you, that the way you think and behave is beautiful and different, and that we need that kind of different in the world. He struggles with bullies at his school--he comes home with marks, physical and otherwise--and I think you made a difference in his life last night. He's chomping at the bit to buy your first book and read it. Thank you so much for sharing, for being so open and raw and real and vulnerable, and for being you. The world wouldn't be the same without you in it.

I sound sappy and ridiculous, but it's true. You had most of the audience in tears thinking about the world without you, and we hated the idea.

jonathan said...

That can cut both ways. When you use the word "neurodiversity" it hurts and offends me and others who are on the spectrum (though I won't speak for everyone the way you repeatedly do) I have a disease/disability, I'm not a member of a separate ethnic group. When you defend the people who state that geneticists and other scientists doing research in autism are eugencists, that hurts also.

The fact that you would question certain parents' love and devotion to their children, implying that they might only seek treatments for their children out of convenience hurt a lot of parents also. So it really can cut both ways.

I read your book and found it interesting, but you really should not give people the idea that the experiments you participated in were a form of therapy, rather than just general research to measure brain plasticity in some people on the spectrum. Casanova and endicott's experiments though did have a clinical purpose.

John Elder Robison said...

Jonathan, you should go back and re-read the descriptions in the book. I participated in half a dozen TMS studies, half of which were testing cognitive therapies and half of which were testing plasticity. The studies Lindsay led were plasticity studies, while Alvaro, Shirley and Ilaria led the cognitive studies. What's confusing is that all of them took part in all the studies.

At the back of the book I reference the paper that they published from the original cognitive studies.

And you are right, Casanova and Enticott also do cognitive work.

jonathan said...

if Alvaro and Lindsay did any studies of cognitive therapies, they've never published them anywhere.

Amy Scanlon said...

Hello John,

The experience you've had with TMS? I had something very similar with a Tomatis based program known as TLP (The Listening Program), basically those are systems that use music through a bone conduction headphone set to deliver both auditory and vestibular stimulation at the same time-also other methods are used to modify this effect such as filtering different frequencies at different parts of the treatments, gating (a sound effect), surround sound features, doing physical excersies during the therapy, combining it with other neurodevelopmental therapies, developmental and/or behavioral treatments, OT, speech therapy or other things.

I did it with Sensory Enrichment (before that was advertised as "Mendability") and intensive vestibular training methods. I got an experience that seems pretty much identical to what you experienced with TMS. I don't know why, however.

For me, the effects stayed long term, (they sort of matured over time) and while there were stressful times in the beginning, I feel that on balance the improvement in my life has been excellent.

John Elder Robison said...

Look harder, Jonathan. Here is one. Shirley based a lot of publications on the original work. All the scientists have publications in this area

Eur J Neurosci. 2011 Jul;34(1):158-64. doi: 10.1111/j.1460-9568.2011.07726.x. Epub 2011 Jun 16.
Brain stimulation over Broca's area differentially modulates naming skills in neurotypical adults and individuals with Asperger's syndrome.
Fecteau S1, Agosta S, Oberman L, Pascual-Leone A.

patricia hays said...

Just finished the book....outstanding. Your ability of self-awareness and capturing those new found feelings into words was impressive. Thanks for sharing so much of yourself and your experiences to help us all gain a greater appreciation for the world of the individual with autism.

Paulene Angela said...

Congratulations on your new book release John. Cannot wait to read it. All these new developments are exciting, frequencies and vibrations, new connections. I have been following the work of Prof. Allan Synder (University of Sydney, Australia), fascinating.

Cailin said...

Wonderful revealing article in Times. Neither NT nor AS perfect. Indeed the article highlights a beautiful quality of the the AS mind I know as NT I don't possess. We all aspire to an"awakening" no matter what neueological type we are. Only Buddha or Christ or the mere handful of our ancestors who were enlightened really knew peace. Congrats on publishing this book. A real contribution to making sense of our humanity and drawing us all together through diversity and celebration of difference. Will kindle it in full.

Cailin said...

Great article in Times given to me by friend. Reveals the innocence and beauty of an autistic mind. My own NT mind lacking to some extend by it's method of processing. However I do undestand the limitations of AS too when operating in NT world. Indeed both neurological types are seeking the same outcomes. Freedom from misunderstanding and peace of mind. Both achieving only partial success. Life calls us to seek something. An awakening beyond our human frailties. One which only Buddha or Christ or a handful of our descendants achieved. As usual only God knows what the neck is going on. Thanks to you John for unravelling the mystery to some extent and to helping us come together as humans in understanding each other. I will kindle the book if it's on there

Karen Davis said...

John, Awesome book!, a triumph for human consciousness in general and not "just" neurodiversity. Your writing about your experiences is outstanding. I like that you open up the possibilities of changing our brains through other types of energy practices than TMS.

My one tiny plaint is that whomever wrote the dust jacket mis-placed your experiences at age forty instead of fifty - "Imagine spending the first forty years of your life..." Gaah!

Here's wishing you second, third, fourth, etc. editions where this gets corrected.

All the best, Karen Davis

Karen Davis said...

John, Awesome book!, a triumph for human consciousness in general and not "just" neurodiversity. Your writing about your experiences is outstanding. I like that you open up the possibilities of changing our brains through other types of energy practices than TMS.

My one tiny plaint is that whomever wrote the dust jacket mis-placed your experiences at age forty instead of fifty - "Imagine spending the first forty years of your life..." Gaah!

Here's wishing you second, third, fourth, etc. editions where this gets corrected.

All the best, Karen Davis

Jack Smith said...

Hello John since you like experimenting with things that might help your autism I highly recommend LSD, good luck to you sir! Write a book about it.

Cailin said...

I read the book. I am puzzled by an instant ability albeit short lived in mirroring emotion. As I understand it this is learned as a baby and infant from other humans especially primary givers? Did I get this wrong?

canadagates said...

Mr.Robison, you are a real pioneer and have done an amazing job in bringing the voice of ASHFA (Asperger's/"high functioning" autism) to the world. Your book Switched On is honest about the emotional conflicts and ambivalence you had to deal with when you participated in the study. I thought some of your methodological observations were brilliant, especially talking the difficulty in separating TMS from sham TMS. I would like to connect with you as researcher/fellow autism writer and have sent you an inmail message through LinkedIn.
Thanks for your great work, Gordon

Kevin Holy said...

Hi Mr. Robison! Thank you for writing this book: I'm reading it and undergoing TMS soon. Although it's been okayed only for depression. The Asperger's side effects will be a bonus, I hope.

I've always dug your rock n roll (and car) experiences, and appreciate your candidness when it comes to Asperger's.

I hope more people with ASD/Asperger's speak up someday, and hope we see more from you on this blog too: photos and experiences and the like.

Kind Regards,
Kevin Holy / Kevathens