Saturday, March 30, 2013

Look Me in the Eye, Adam Lanza, and Discrimination

The news came out a few days ago, with the unsealing of search warrants in Newtown, CT.  Police took a variety of things from the Adam Lanza home.  It was obvious why many were taken:  Adam's journals, some swords, guns, ammunition, computers, and more.

Near the bottom of the list, three books were listed together:  Look Me in the Eye, Born on a Blue Day, and an NRA Pistol Guide.  Since then I have not stopped wondering . . . why did police pick up on those books?  Were there handwritten notes inside?  Were they in a prominent spot in Adam or his mother's room?  Were they the only books in the house?

We may never know.

What we do know it that the continued reporting of Asperger's in the same passage where mass murder is discussed ties the two together in many writer's minds.  Ultimately, that leads to discrimination as others with Asperger's are perceived - even subconsciously - as potential killers and so denied opportunity or targeted for bullying and harassment.

Here are a few links to places where I discuss that.  I encourage you to keep the dialogue going, and remember that there is more at issue here than what some call "bad reporting."  It's indicative of widespread ignorance that can and does lead to mistreatment of innocent people with autism - adults and children alike.

The Springfield Republican (newspaper)

CBS TV, Hartford (video)

Channel 3 TV, Springfield (video)

I welcome your comments, and as I said, I encourage you to spread the word that Asperger's and autism do not belong in the same sentence as "mass murder" or any similar phrase.

John Elder Robison

Thursday, March 28, 2013

Look Me in the Eye and Adam Lanza

Earlier today, the media reported a list of items police took from Adam Lanza’s Newton home.   Three books were listed:  my own Look Me in the Eye, Daniel Tammet’s Born on a Blue Day, and an NRA pistol shooting manual.

What do I think about that?  One person after another has asked me that question . . .

Look Me in the Eye is the most widely read memoir of life with Asperger’s in the world.  Hundreds of parents have written to tell me how they read my book to help understand their child.   From the beginning, news reports suggested Adam had Asperger’s, and they said his mom doted on him.  Given that combination, it’s no surprise my book was in the house.  

When you think about what happened, just remember that people on the spectrum – whether with traditional autism, Asperger’s, or PDD-NOS – are far more likely to be victims of violence than perpetrators.  In fact, even as the media has had a field day speculating about Lanza’s Asperger’s, they have hardly even mentioned that two of the children he killed (Dylan Hockley and Josephine Gay) were on the autism spectrum too.

One interesting thing has escaped mention - Adam's medications.  Were there drugs in his system when he committed the murders?  Was he on psychiatric medication, and was he taking it as directed?  The media has been curiously silent on that count.

I wrote a story about Asperger’s and violence  - and how one does not predict the other - for Psychology Today.  You can read it here:

Every time there’s speculation about a connection between Asperger’s and murder innocent people at put at risk.  Many of us with eccentric interests have already learned the hard way how others may misunderstand our actions.  My own son fell victims a few years ago, when a publicity-seeking prosecutor tried to twist his innocent scientific experiments with explosives into imaginary terrorism.  That story is described in my newest book, RaisingCubby, which stands as a cautionary tale for what can happen when those of us who are different fail to understand how the public may misconstrue our actions, and how other people may try to twist our eccentricity into something much worse for their own petty gain.

I’d like to see the question of what went wrong in Adam Lanza’s mind answered as much as you.  Unfortunately, they present speculation isn’t going to get us that data.

Sunday, March 24, 2013

How much Asperger's is really face or emotional blindness?

Is the horse above scared, anxious, or eager?  You tell me, because I'm really not sure.  It begs the question . . . how much of what people call Asperger’s is really Prosopagnosia and/or Alexithymia?  A trained clinician with a screening tool like the ADOS should see the difference, but what about people who self-diagnose, or therapists who diagnose "off the cuff?"  What would a mistake really mean?

The answer depends on how the conditions relate to one another.  Are they subsets or dependencies, or independent conditions that coincidentally look the same at times?  The words themselves are a mouthful, aren’t they?   Prosopagnosia is the medical term for face blindness; the inability to recognize someone from a view of their face alone.  Alexithymia is the term for people who have difficulty identifying and describing emotions.

Do you have one or both of those conditions?  If you’re on the autism spectrum, there is a good chance you do, and if you’re like me, you may not even know it.  I have always had difficulty recognizing people out of context.  I seem to need context and setting to make sense of the people in my world.  Otherwise, I’m lost in a world where every face belongs to a stranger.

I’ll give you an example:  I see a Jaguar pull up to our service department, and I watch the owner get out.  As he emerges from the car and walks toward me I put the picture together in my mind:  The look of his car may identify him (I recognize many people by their cars.)  The day, and our schedule, may remind me who he is.  The overall appearance of the person, and how he’s dressed also gives me a clue.  Putting it all together, it clicks.  I say to myself, Doctor Parker is here to drop off his car.  He walks in and all is well.

But put us in a different setting – like walking on the beach in Connecticut that summer – and Doctor Parker and I are in a very different position.  We see each other, in bathing suits or shorts and a tee shirt.  I feel no sense of recognition.  He says, “Hi, John,” and I panic,  though I’m careful not to show it.  Who is this person?  I have no idea.  Knowing I am recognized, I say, “Hi, how are you doing?  What’s new?”  I hope his response will give me a clue as to who he is, because I have no idea at all.

I’ve been that way all my life.  When I thought about it – which wasn’t often – I just figure that was how people are.  It wasn’t until last fall – when I participated in some testing – that I learned I have a weakness in recognizing faces – one with a name.  Prosopagnosia.  I was shocked to discover how much of my recognition of the people around me depends on context.  The extent of my weakness in this area was actually frightening to behold.

Here’s what I found:  If I take a photo of a close family member – my son, for example – and render it as a black and white line drawing, then crop it so there’s nothing but the face – I will no longer be able to recognize my own son in a lineup of other generally similar faces!  I was shocked to discover that, but it’s true.

I began to wonder if this was part of my autism, or a separate problem.  For clearly, it was a problem.  It’s not a huge issue most of the time, but I’ve been aware of it enough that I make an effort to hide it, so as to avoid embarrassment and humiliation.  Luckily, my efforts usually work.

Want to check your own ability to identify faces?  Try this test:   When I took it, I recognized 25% of the “famous faces” I was familiar with.  According to the test site, the average person scores closer to 75%, which explains why I don’t recognize Doctor Parker – or most other people – when they appear out of context.

Alexithymia was another surprise for me.  I’ve long known that I have trouble reading faces instinctively.  However, I taught myself to compensate by learning expression and body language.  I used to logic to determine what instinct could not show me.

What I didn’t realize was that I still missed the larger emotional picture.  Knowing someone is mad is better than being ignorant, but knowing that fact does not really tell me what to do in response, and reliance on logic doesn’t work too well either, at least when compared to someone who doesn't have this problem.  And problem it is - even as I see how many aspects of autism confer both gift and disability (not always in equal measure), this trait is purely disabling.  If there's a good side to it, I've yet to find it.  

Apparently there is a whole network that’s missing or broken inside of me, and it adds up to this thing they call alexithymia.   You can take a test for it yourself, right here:

Here’s the interesting thing:  Alexithymia occurs in 10% of the population, yet only 1.1% of the population has autism.   So the inability to read emotion is faces is far more common that most people know, and extends well beyond those of us on the autism spectrum.

Prosopagnosia is less common, affecting 2-2.5% of the population – a percentage that’s roughly double than that of folks affected by autism.   However, unpublished research from Sapienza University of Rome suggests that only 40% of people with autism also have prosopagnosia; meaning that three-quarters of prosopagnosia people don’t have autism. 

Autism is described as a communication disorder.  Clearly, people whose communication challenge involves the ability to speak or understand language are not being affected by these conditions.  But people with Asperger’s and more social or nonverbal communication impairments may well be.

In fact, researchers of both conditions cite examples of people misdiagnosed as autistic when in fact they had prosopagnosia or alexithymia.  It’s easy to see how that could happen, if the diagnostician focused on communication challenge and not the broader picture – special interests, need for routine, and other traits of autism as described in DSM or ICD.

It begs the question:  Are prosopagnosia and alexithymia independent disorders or are the what we might call proto-autistic conditions?  That fact that so many people with autism also have one or both conditions suggests there may be a close tie, neurologically.  

One might be tempted to speculate that a large fraction of the Asperger population – a group principally defined by the inability to read unspoken cues and messages in the faces and bodies of others – actually has one or both conditions as a principal disorder.

But . . .

Other studies have shown that biomarkers of autism (brain plasticity, brain imaging markers, and genetic markers) tend to be the same in people with Asperger’s and traditional autism, and those people, as a group, are set apart from the non-autistic population. 

So what might we conclude from this, and what else we know about autism today:
- Both prosopagnosia and alexithymia are more common than autism (though we seem to have misjudged the commonness of autism by quite a bit)
- Both conditions are very common but not universal in people with autism.  Are the a result of autism, or are they independent?  No one knows.
- The close association between them suggests that autism, prosopagnosia and alexithymia may share some common causative factors; even that one may cause the other in whole or in part.

I’d be very interested in seeing some new studies that looked more closely at prosopagnosia and alexithymia.  They are two under-studied conditions that might shed some light on the mystery of why we are the way we are.

For further reading:



John Elder Robison is an adult with autism.  He’s the author of three books – RAISING CUBBY, LOOK ME IN THE EYE, and BE DIFFERENT.  He’s a member of the Interagency Autism Coordinating Committee of the US Department of Health and Human Services, and he’s a strong advocate for people with autism and neurological differences.

Wednesday, March 20, 2013

Writing Retreats in Beautiful and Peaceful Places

It's been a while since I had a story on writing, even though some think this is a writer's blog.  Today's post is a guest essay from friend and fellow author Karen Dionne.  Karen may be best known as a founder of Backspace, one of the best sites on the Internet for writers of all shapes and sizes.  This fall, she's hosting a star-studded workshop in Salt Cay, Bahamas.  Here's some background about the island, and why you'd want to visit.  Assuming you're the writing type, of course . . .
* * *

If you Google "Salt Cay, Bahamas" and select the satellite map view, off the coast of Nassau you'll see an impossibly tiny green and brown spoon-shaped strip of land in a turquoise sea.
Zoom closer, and coconut palms and white sand beaches appear. Closer still, and you can see the blue roofs of Dolphin Encounters which shelter the dolphins and sea lions that live in the lagoon.

In the late 1800s Salt Cay [pronounced "key"] was the haunt of privateers and pirates who visited the island not to bury treasure, but to cull salt from the lagoon to preserve their food. Today the island is the home of the 3 dolphins who played the famous aquatic star in the Universal Studios movie "Flipper" with Paul Hogan and Elijah Wood.
This incredibly beautiful island also has a unique literary history.
John T. McCutcheon, The Chicago Tribune's chief foreign correspondent, Pulitzer Prize winner, and dean of American political cartoonists, purchased the island in 1916 sight unseen for $17,500.

During its heyday as a social destination in the 1920s McCutcheon hosted numerous earls, counts, dukes, and duchesses. These were joined by Drew Pearson, John Dos Passos, James Thurber, Arthur Crock, Archibald MacLeish, and Kenneth Roberts.

In later years author John Marquand became the island's first regular renter. Charles Lindbergh and his wife, Anne, who were friends of Marquand, came down once for a visit, and during her stay on the island Anne Morrow Lindbergh worked on her book, Gifts From The Sea.

William Styron also vacationed on Salt Cay, where he put the finishing touches on his soon-to-be-bestseller Sophie's Choice. Styron loved Salt Cay, and dreamed of establishing a writers' colony there.

"Don't sell it," he implored the owners who were struggling to keep up with the expense of maintaining a private island. "Wait for me. I'm going to get a bundle soon."
The island sold before Styron's book did, so Styron never got the chance to fulfill his plans. But now the island's current owners are rekindling his dream by hosting the Salt Cay Writers Retreat October 20-26.

With a faculty that includes #1 New York Times bestselling authors Robert Goolrick and Jacquelyn Mitchard, editor Chuck Adams (Algonquin Books; Water for Elephants) and Amy Einhorn (Publisher, Amy Einhorn Books; The Help), and just 65 students, the Salt Cay Writers Retreat promises an unparalleled opportunity for advanced literary and upmarket commercial fiction writers, memoirists, and narrative non-fiction writers to take their manuscript to new heights of accomplishment in a gorgeous and inspiring setting.

Each morning will begin with a small-group workshop crafted to provide writers with individual attention within the bonds of a close, friendly community. Afternoons will be spent writing, or exploring Salt Cay with the instructors and learning more about the writing life from the vantage point of a white sand beach. Special outings to swim with the dolphins and to experience the island's unique history are included as part of the curriculum, while evenings will be filled with nightly cocktail hours with student and faculty readings.

Styron would have been pleased.
Karen Dionne is the internationally published author of two science thrillers from Berkley. She is co-founder of the online writers community Backspace, and in addition to the Salt Cay Writers Retreat, she organizes the BackspaceWriters Conferences held in New York City every year.

Blog host John Elder Robison is the NY Times bestselling author of Look Me in the Eye and Be Different.  His newest book, Raising Cubby, is now in bookstores everywhere, and online in ebook and audio formats