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What I'm thinking/What I'm reading

Jake Ruddiman on Hamilton -- the man and the musical

8/30/2016

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What did Miranda get right?  What may not be historically accurate?  
Dr. Jake Ruddiman, Associate Professor of History at Wake Forest University, shares some thoughts with "Humanities Viewpoints Podcast."   Click the link!


http://humanitiesinstitute.wfu.edu/podcast?utm_source=September+2016&utm_campaign=September+2016+Newsletter&utm_medium=email

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Switched On!  Robison's Brain Change and Emotional Awakening 

8/24/2016

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(​ So what has changed in John Robison’s life since 2008?                             
 
​A lot. 

His 2008 memoir, Look Me in the Eye, made him famous. (See review below.)  Many requests for conference appearances and speaking engagements followed as he became a public face of Asperger’s.   He wrote two more books that further developed his thoughts.  Be Different (2011) expounds on his belief that the “strength” of Asperger’s minds should be valued, even as social skills are fostered and  learned.  After meeting so many fellow “Aspergians” and their families seeking to find the confidence Robison exhibits, he was compelled to write this book as advice for his “Aspie” peers, their friends, family and teachers.
               
He also wrote Raising Cubby (2013) about life with his son who is also on the spectrum with what Robison calls Asperger’s.   The brilliant subtitle captures the author’s  loving and exasperated tone throughout — A father and son’s adventures with Asperger’s, trains, tractors, and high explosives.
               
But then Robison’s life and world changed beyond imagination.  This is the rest of the story that he tells in Switched On: A Memoir of Brain Change and Emotional Awakening (2016).
               
At one of his many public appearances, Robison was approached by Lindsay Oberman, a post doc researcher at Beth Israel Deaconess Medical Center in Boston.  She explained that a group at Berenson-Allen Center for Noninvasive Brain Stimulation was seeking adult volunteers on the autism spectrum to be part of a project on improving emotional intelligence. 

Robison, always open to learning anything and particularly about the mystery of his Asperger’s mind, was game. 

 So began his astounding experience with TMS — Transcranial magnetic stimulation.  Switched On is, in Robison’s style, a memoir of his journey into this new arena.    But he also dives into the realm of neuroscience.  Robison sought to learn as much as he could about the TMS process and brain function. Sharing all of this with his readers makes this book a slower go.  That said, the technical aspects enhance understanding of the dramatic changes that turn his life and world inside out.  
  
For instance, after a TMS session, he “felt” music for the first time in his life.  Even with years of working as a sound engineer for rock bands, and more recently, as a photographer with access to the “front of the room” at major concerts, he suddenly was moved to tears by lyrics of a familiar song.  This dramatic moment, which opens the book, was his first inkling that TMS was indeed changing his brain.

 Alvaro Pascual-Leone, the MD-PhD head of the staff at Berenson-Allen Center for Noninvasive Brain Stimulation is a cognitive and behavioral neurologist.  In the foreword of Switched On he writes that his mission “is to help patients affected by various neurological and psychiatric condition, including autism epilepsy, stroke, Parkinson’s disease, or drug resistant depression.”   The center’s intent with Robison and with many other subjects, including Robison’s son Cubby, was not to “cure autism” but rather “to learn more about the fundamental mechanisms of brain function in individuals with autism spectrum.”

But as Robison writes, “brain plasticity is the ongoing capacity of the brain and the nervous system to change itself.”  TMS stimulated his brain to “rewire” and changed his emotional intelligence.

So are you thinking of the memorable Flowers for Algernon by Daniel Keyes?  Robison did a lot of thinking about that fictional character as he wondered and worried that what he was experiencing would also fade.

 But the ability to feel emotions and to relate to people “normally” did not abate, both for the good and the bad.  Dealing with a death in his family without the insulation from emotion inflicted terrible pain he had never before felt.   Relationships that had been forged and cemented by his Asperger’s self —broke apart, causing him sadness he had never experienced, even in the worst moments of his childhood. 

The good, however, is immeasurable.  He enters into a new relationship that blossoms into a very happy — albeit unconventional — family.  His photography – always admired for composition and realism – “like the soup containers on the grocery store shelves” – now, he reflects, “are like Warhol soup cans.”   Brighter, vibrant less real and more emotive.

 Towards the end of the book Robison writes, “Sometimes I felt as if I had been turned upside down and shaken, even though any direct effects of TMS had long since dissipated…I still feel significantly changed when compared to my pre-TMS self.”  Friends and family who know him well, and those who encounter Robison infrequently, have the same response.  “You’ve changed.”

One person who has known Robison well over the course of his many years in the music world, told Robison that he always admired Robison’s work.  “But you were also difficult, abrasive, and socially inept.  I actually avoided you.  Then, a few years ago, you changed, and it was dramatic, to say the least.  Now you’re a sociable and likable person that I seek out.”

The most significant part of this book is Robison’s discussion of the “what’s next.”  As he maintained in the conclusion of Look Me in the Eye, Robison again embraces his Asperger’s, providing insights into how his brain works.  For example, he could hear minute vibrations in sound systems, he “hears” engines of finely tuned cars, and he senses — in a split second — a moment that he captures on film.  He refers to his friend, Temple Grandin, who has been able to explain to “normal” brains how her brain see pictures and processes connections almost instantaneously, and how she “understands” what animals are feeling and communicating.

Do we really want to “fix” this type of mind?  Should everyone be “neurotypical?”

 Robison is fearful of “early identification,” saying that “Most of the exceptional things I’ve done in my life were facilitate by my being autistic.  What if all that had been wiped away by early intervention?”  

He states, “The problem comes when we presume all difference is disability, and it’s not.”  Those who work closely with gifted children and adults recognize traits that too often are labeled ADHD, or “on the spectrum.”   Forget the labels.  Work with the abilities that are evident and celebrate the differences.  Address the weaknesses – social behaviors, for example — and build on all the abilities these unique brains possess.

Robison continues to be a remarkable man doing amazing things.  Now in his 50s, Robison is energized to pursue his next steps.  He is concerned about the dysfunction and inefficiency in how research is funded that keeps projects separate and too often secreted.   Then, too, is the problem of specialization, noting that one researcher cannot possibly keep up with information in other fields.
In this complicated system, Robison sees a role he can fill.   “I began to see myself as a possible bridge, because I am not a scientist and I’m not in conflict or competition with any of the researchers.” From his now extensive network, Robison can see “technological combinations” and connect those who are able to capitalize on multiple strands of research.

He has embraced this role in the autism and neurodiversity movement which led to his appointment as William & Mary’s Neurodiversity Scholar in Residence, developing the first neurodiversity program at a major American university. 

He is part of advisory boards that shape research, and he advises a group at Yale as part of an NIH biomarkers consortium.   He is on the Interagency Autism Coordinating Committee, for the US government. He was a member of the steering committee for the International Classification of Functioning, Disability and Health (ICF) Core Sets for Autism initiative for the World Health Organization.

And he still services cars.
 
 
 
 

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Look Me In the Eye  John Elder Robison's remarkable memoir

8/24/2016

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 ​This review was published in February, 2008.  Read this first, and then the next post for a really amazing "rest of the story." 
 
 
 How could something as common as making eye contact be so difficult?  How can people who are so brilliant with solving complex calculations, for example, be so limited in the basic everyday skills of life?

It seems ironic that the very people who severely suffer from being able to connect normally with other people may be the very ones who offer society answers to the riddle of Asperger’s Syndrome.
John Elder Robison has written a poignant, insightful, brilliant memoir titled “Look Me in the Eye: My Life with Asperger’s” (Crown, 2007).  It is must reading.  As the numbers of those on the autism spectrum rise dramatically, it is imperative that society pays attention to these unique people. We cannot afford to lose what they can offer.

Autism is one of the most confounding mental conditions.  Little is known — yet — on what triggers the disorder in the brain.  Until the 1940s, autism was not even in the medical lexicon.
The symptoms of Autism, however, are difficult to ignore.  The most overt symptoms are a difficulty — often severe — with social interactions, problems with verbal and nonverbal communication and repetitive actions or obsessive fixations.

These behaviors can range from mild to disabling on what researchers now understand and call the autistic spectrum disorder. Asperger’s Syndrome is on the high end.
Long before the behaviors had a name, those with what we now call Asperger’s were noted as being out of the ordinary.  Called odd or eccentric or quirky, some found acceptance due to one other prevalent attribute. 

Some exhibit genius. 

John Elder Robison speaks eloquently to both his brilliance and his heartbreaking disabilities. That he is able and willing to do so is in itself a story.

Many recall the best selling memoir by Augusten Burroughs titled “Running with Scissors” (St. Martin’s Press, 2002).  He captured the public’s attention with his tale of growing up with an insane mother, an alcoholic father, being “given” to his mother’s psychiatrist and being raised in increasingly bizarre circumstances by truly dysfunctional characters.

Yet what seemed to intrigue his readers the most — based on many letters and the predominant comments he received at book signings — was the relatively brief mention in the book about his older brother who lived with Asperger’s.

In the touching foreword to “Look Me in the Eye,” Augusten Burroughs shares how he convinced his adored older brother to tell his own story.
 
“You should write a memoir. About Asperger’s, about growing up not knowing what you had.  A memoir where you tell all your stories. Tell everything.
About five minutes later, he e-mailed me a sample chapter.  ‘Like this?’ was the subject line of the e-mail.

Yes. Like that.”
 
Mr. Burroughs openly adores his “brilliant brother.”  Readers will also come to recognize that John Elder Robison is truly a genius. 

Those of a certain age remember the rock band Kiss and the smoking guitars and other wild special effects that took rock and roll into new dimensions of “arena rock.”

Mr. Robison made those guitars smoke and built the sound systems that took rock high tech.
​
Remember Super Simon, one of the first electronic games?  In the 1970s, Mr. Robison was on the research and design teams at Milton Bradley that transformed kids’ toys.

For the past twenty years, J.E. Robison Service in Amherst, Massachusetts has been repairing and restoring high-end automobiles (very high end) for grateful costumers who come from all over the world to have John Elder Robison work his magic.

All this is self-taught.  Actually, everything Mr. Robison has done in his life has been self-taught.  Even learning — in his forties — to act “normally.”

It is hard to say what aspect of this book is most fascinating — the descriptions of what Mr. Robison calls “Aspergian” behaviors or his savant abilities.

What he makes clear is that Asperger’s and savantism are linked.  He has come to appreciate that, even without a high school diploma, “the knowledge I have is genuine.”  He also says he has come to understand that the skills he has to design, engineer, build (anything!), “are rare.”

He writes, “There are plenty of people in the world whose lives are governed by rote and routine. Such people will never be happy dealing with me, because I don’t conform.  Luckily, the world is also full of people who care about results, and those people are usually very happy with me, because my Asperger’s compels me to be the ultimate expert in whatever field of interest I choose.  And with substantial knowledge, I can obtain good results.”

Mr. Robison’s story emphasizes two compelling points.  The first is that Asperger’s does not need to be “fixed.”

“I’m not defective. In fact, in recent years I have started to see that we Aspergians are better than normal!”

Mr. Robison continues, “And now it seems as though scientists agree: Recent articles suggest that a touch of Asperger’s is an essential part of much creative genius.”

We think with awe about geniuses in literature or life: the calculating abilities of a “Rain Man,” the intuitive thinking of a Sherlock Holmes, the tenacity and analytical skills of a Jane Goodall. 
But we also disparage the lack of social graces in these geniuses. These are people who did not play nicely in the sandbox.

Neither did John Elder Robison.  In another poignantly funny account, he relates his own early childhood attempts where he failed miserably at playing nicely in a sandbox — or anywhere.

 However — and this is his second important point — it was not because he didn’t want to play nicely with other kids. 

He sadly remembers teachers who pointed to him, alone, with the comment, “He doesn’t want to play with others.”

He asserts, “They were dead wrong.”

Mr. Robison makes clear in his book and in interviews that “the bitterest disappointment of my life was the inability to make friends.”

It speaks to the nature of this man that he is happily married. His chapter on being a husband and father are touchingly sweet and very funny. Moreover, he has — now — a wide circle of good friends with whom he shares his interests and theirs.

He says that he has learned the difference between “eccentric and weird” and he strives to be “a nice eccentric.”  He accepts that he will never be “normal,” nor does he want to be.

“Asperger’s is not a disease.  It’s a way of being. There is no cure, nor is there a need for one.”
But, there is a need to expand on what is considered “normal.”  Society needs to extend the range of what is considered accepted behavior. 

The title of the book is a particular sticking point for Mr. Robison and others on the autistic spectrum.  His explanation of why he does not look people in the eye is enlightening: He isn’t shutting the world out, he is intensely taking it all in. How much easier his life would have been if “normal” people understood just this simple difference.

As more is known about autism and Asperger’s Syndrome — much from Aspergians themselves — the better it will be for them and for those around them. 

For those who want to read more about it, in a final chapter Mr. Robison provides a host of sources for information about Asperger’s and autism including support groups, books and other memoirs.
Mr. Robison’s website is amazing. (www.johnrobison.com).  He posts book information, photographs and his blogs.  Most intriguing is an hour long video of his first public appearance to launch the book.  Mr. Robison reads passages, answers questions from the audience, and interacts with this brother who moderates the event.

He tells of having to audition to read this book for the Crown audio edition — he was accepted — and how this medium provided another breakthrough for Aspergians. 

“Moms of autistics and Aspergians called and wrote {to say} my voice is distinctive” with tones and nuances that are recognizable as Asperger’s. 

He says had he known the power of the spoken word, he would have insisted the audio edition not be abridged.
​
Now that Mr. Robison finally has a diagnosis and his own appreciation for being a “proud Aspergian,” he is very open to sharing with as many people as he can reach in order to save others with Asperger’s and their families the pain he experienced.
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
                                                                     

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    I wrote a column, Book Notes, for many years for local central NJ weeklies.  Newspapers are a dying breed, but the desire to share thoughts on books lives on.  
    Welcome to my blog.  Please chime into the conversation. 


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