Dear AofA readers, I'm going to share a few thoughts about this book by one of my first friends in the autism writing community, John Elder Robison. I know some of you will get your back up when I talk about our friendship. And about this new book.
Please stand down.
I am too damn tired to manage a negative day. I have a 21 year old with 3 more months of school and the adulthood cliff awaits. My days are filled with trying to save our funding to pay for a palatable day program for her. She has a 19 year old sister with autism. She has a 15 year old sister with autism too. As I'm typing this, my back is seizing up with stress pain. I'm exhausted. We haven't slept a full night in years. Money is tighter than a 20 year old wedding dress. Like so many of you, I've been using biomed treatments and behavioral and educational programs for years and years and years. Anyone remember the old Yahoo group TNOT? Tough nuts and old timers. My 3 kids are tough nuts. I'm an older timer at 52. Treatments have been hit or miss for us.
Today I want to talk about John and his latest book, Switched On, which is about what happened to him when a treatment WORKED. The treatment is TMS - Transcranial-Magnetic-Stimulation. John was part of a study conducted by Harvard and Beth Israel Hospital in Boston. Read about TMS here.
When I first met John in 2007. His Asperger's was painfully apparent. At the beginning, in the middle and at the end of the day, John is an adult with autism/Asperger's. We met at the Farmington Mall in Connecticut for lunch. He barely looked at me. (And I thought I looked fetching that day! HA HA!) His voice had a rather high pitch for such a large, strapping man. Check out that photo of us, he's well over 6' tall. I attended the Book Expo America with him. this is a huge book event, and Random House had featured John's memoir Look Me In The Eye with an impressive splash. John and I walked the show together. I remember he had a list of books he wanted - and publishers give the books away at BEA. I had a list too. He walked into a booth and said bluntly to the young, mostly female marketing staff who was handing out books, "I need this (title) book." I immediately saw their response. They looked at John funny. They glanced at each other with the look that said, "Who the heck is this rude man?"
They did not know he was one of the hottest new authors at the event.
He did not know he had been borderline rude and was being judged by them. He did not notice their looks of disgust. I did. It bothered me. A lot.
Over the years following that event, I saw John gain social skills because he was interacting with the public in a new way while on book events. Stupid he's not, and he told me at our first meeting how he had trained himself to look up and make eye contact at predetermined intervals to accommodate his Asperger's.
But one night, I got a phone call from John that blew me away, immediately after he began his TMS. His words to me?
"Kim, I can read minds!"
In my neurotypical, female fashion, I immediately thought he meant literally that he could read minds. He explained that following TMS, he could tell what people were thinking by their facial expressions. A first for him and something you and I, if typical, take for granted. You know how we can get into trouble with email - because the reader can't sense our nuance or tone? Imagine life like that.
I was thrilled for John. Turns out, the result wasn't as thrilling as one would hope. I won't tell you much about the book, I think it's important for you to read it. I will tell you that his subtitle could be, "Be careful what you wish for."
Suddenly the safe cocoon of Asperger's was ripped away, exposing John to all of those nuances, some good, many bad. His marriage collapsed. Relationships changed. TMS rocked his world.
I'm still thrilled. Why?
Because John, who many AofA'ers think of just that big Neurodiversity guy, used a treatment to ameliorate a symptom of autism. And it worked. Just like we try with our own kids with biomed and other treatments. He medically changed himself. Just like we do with when we treat the gut, the heavy metals, the microbes. He's one of us.
Please refer back to the top of this post.
Never in the 9 years that I have known John has he ever denied the severity of my girls' autism. Never has he told me I should leave them as they are without treating their autism. Never has he accused me of not loving my girls for wanting to change their autism.
He respects me.
I respect him.
I asked him if I could come to William and Mary college where he teaches a class in Neurodiversity. I want to tell the students my perspective as a parent. He pointed out that many of those students have siblings just like my Mia. My Gianna. My Bella. So they process the concept of Neurodiversity differently that the Americans (are there any?) who are not yet touched by autism within their families. The siblings know the challenges, the heartache, the worry. And they know treatment is a MUST.
We need to learn about how this treatment might help our own kids. Believe it or not, not even Harvard and Beth Israel could get proper funding to expand the study. After all, there's no pill to be sold. No profit in actually remediating some of the crippling aspects of Asperger's. I think this surprised John very much. Not us, right? We know that drill.
If our kids could benefit from TMS at a much younger age, perhaps they could manage the changes better than a grown adult? Life is risk/reward. Most of us would take the risk.
So I invite you to stand together and please get a copy of Switched On.
Kim Stagliano is Managing Editor of Age of Autism. Her new novel, House of Cards; A Kat Cavicchio romantic suspense is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book.