John Elder Robison's Blog, page 19

Some holiday darkness on a fine winter eve

May I offer you these thoughts, on the anniversary of my divorce, with the holidays coming. And before you begin, this is not a tale of my wife and I, so please do not make that particular interpretation . . . Take it as it is; a story of autism and vulnerability at a time of year things often go wrong . . .

Lies, evasions, and half truths. All are deceits. Yesterday's white lie, once discovered, reveals the big one from the month before. That's the problem with lies. When you unravel one, there is always another behind. It's a ball of string that leads to the darkest recesses of the mind . . .

It's easy to demand honesty, to hold the other person to a high standard. It's hard to deliver, though, and harder still to know if we receive the truth in our most intimate exchanges. So often, love and hope blinds to what's obvious, when seen from a distance.

Our understanding of others is based on observation and interpretation. Revisited in the hard light of freshly discovered deception, everything changes. Was it innocent, or was it planned?

Relationships end, and we don't really know why. A few months later, the truth emerges, in a few casual words. Innocent enough, until the idea percolates in the mind. There were the phone calls, those unexplained days, and those fights that made no sense . . . suddenly, everything looks different. It feels wrong. Did those things really happen, or was it all in the mind? When one fact proves real, other evidence is harder to ignore. Hope gets replaced by resignation. And so the mind begins its tortured journey.

What seemed sweet and sad immediately turns shabby and tawdry. Sympathy turns to cold rage, as the realization of what's really happened sinks in. All of a sudden, the magic of the precious days before is shattered, never to seem beautiful again. Was her sweet smile real, or was it just a pretty lure, reeling him in?

Logic tells us it started out real. Love grows, and goes astray. Life intrudes. Other options appear. At some point, what was real became false. And looking back, we cannot know the precise time and place that it all went wrong.

The optimist says it was beautiful, until the very last day.

The pessimist says he was played for a fool, right from the start.

The realization sinks in that it's really over. Some would put her photo in the drawer. Others would cast it in the trash. In the end, everyone moves on. But for some, the pain lingers for a lifetime.

That's the terrible curse of autism, when love goes wrong. We lack the defenses others have evolved; our hearts are easily broken and hard to repair. We perseverate, and ugly thoughts circle in our mind, slicing jagged tears in the soul with every gyration. We lack expression, so the feelings stay locked inside, eating us alive. And worst of all, we lack the ability to sense positive energy from others, to rebuild our psyche. Breaks are the start of a hard, hard time. For some, it's a path to alcohol or depression. For others, it's a door to suicide.

I wish it wasn't so, having stood in those doorways myself.

Autistic people are particularly vulnerable to deceptions of the heart. Sadly, we often bring them on ourselves, through a mix of hope and blindness. We cannot tell what the other person intends, because that's the nature of social blindness. We're drawn to the smile, when another might have seen the phony. We stay when we should run, because we fear we're disabled, and love may never come again. For so many reasons, we are vulnerable.

It would be easy to blame predatory people. Narcissists. Sociopaths. More and more, that's the American way. Blame someone or something else; something beyond our control. Many would seize that argument. I don't believe that.

I believe most people are good, but life presents them hard choices. Sometimes the paths they choose are not the best. As much as we hope otherwise, we cannot control where another life leads.

Sometimes, all the roads hurt.

This is a hard time of year for many of us, me included. When Thanksgiving week comes I pray for the arrival of January second. I wish you Godspeed to the other side.(c) 2007-2010 John Elder Robison

The Making of Be Different - the cover

My next book, Be Different, goes on sale in just five months. During that time, I'll be sharing stories about the book and its creation, beginning with this story about the cover.

I've always liked trains. I caught the bug from my father, who had a PF Flyer set as a kid. I was four years old when he first told me about them. However, as any kid knows, hearing is not as good as seeing. My father's description was intriguing but I wanted more. I wanted the actual trains and I was ready to go on the hunt.

"Where are they?" That was the obvious question. After all, the only conceivable reason to tell me about the trains was that he wanted to give them to me. At that point in my life, other people only existed to serve my whims and wishes. "Can we get them so I can play with them?" My father seemed surprised at that. "I don't know where they are, son. They must be back home in Lawrenceville."

That was not the correct answer! It didn't even make any sense, but I was as reasonable as any toddler could be. "Okay, let's go there and get them!" So that was what we did. As soon as my dad's University closed for the holidays we loaded our VW Bug and headed south. It was a long drive from Philadelphia to Georgia. We spent the first night in a motel, where I stayed up late dreaming of Santa and presents. We spent the next night at my Aunt Marjorie's in the Carolina mountains. On the third night I fell asleep in the car, but I woke up when my dad turned off the highway onto the long gravel driveway to my grandparent's home.

The cool night air filled the car with the familiar scent of the Georgia woods and small stones popped and crunched under the tires. We had arrived! A few days later, when I awoke, there was a brand new Lionel train set waiting for me under the tree. It was the greatest Christmas ever. The engine was my favorite part and I carried him everywhere. I even tucked him in with me at night. I loved that engine so much that my mother made me a painting of him, which I've kept in my home ever since.

I wore that first Lionel train to bits. Metal dented, pieces fell off, and track got bent. Eventually my train disintegrated, and the pieces were consigned to a box, to be devoured by Snort, my voracious little brother. I grew up, left home, and did adult things, but I never forgot about trains. Even now, when I hear a whistle, I'll step on the gas and race to the crossing, just to watch the cars roll by. I think back to my childhood with that Lionel set, and my teen years riding the slow freights up to Vermont, and it makes me smile.

When I got my own kid, one of the first things I introduced him to was railroading. I even wrote a story about trains, the kid, and me for my book Look Me in the Eye.

When it came time to publish my second book, we needed a cover, and where did our thoughts go? You guessed it . . . trains. Most times, book covers are created by graphic artists with green eyeshades. They work unseen, in incense-filled rooms at publishing houses. This one started a little bit differently.

Depending on who you believe, Be Different's cover design originated with Rachel Klayman, my editor, or Whitney Cookman, Crown's head of graphic arts. Either way, I immediately recognized a winner. I quickly moved to make the design my own.

If we're going to have trains on the cover, they've got to be my trains! Crown made a mockup cover using stock photos of two engines and a caboose. However, they had made the same mistake my mother made, painting my trains so long ago. They were not coupled together right. I knew the cover would be immeasurably better with my engines and a caboose, properly configured. I'm not so sure they shared my certainty, but they went along somewhat willingly. I promised them test pictures.

This will be simple, I thought. I'll set two of my engines and a caboose on the table and photograph them. That was the plan, but then things got complicated. The first problem was the trains themselves. I've got over one hundred Lionel engines and cars of various shapes and colors. However, I could not find a single matching pair of steam locomotives.

I called my friend Enzo DiGiacomo and explained my predicament. "Come on down and take a look at my trains," he said. He had a dozen locomotives, all the same color - black. Enzo is so proud of his trains. They are beautiful, and probably more valuable than the whole building where I lived as a kid.

I was embarrassed to admit they were just too nice. I had never seen trains like his before. I looked around the basement, at buildings, little people, cars, and accessories. All had been painstakingly assembled by hand. Model airplanes hung from the ceiling, swooping and diving over our heads.



And there on the bottom shelf, in a beat up cardboard box, I saw the answer. "That's the stuff the grandkids play with," he said. I pulled the box out and looked inside. Half a dozen broken old cars, some abandoned toys, and two beat up black locomotives. Just like the trains I'd had, forty-some years before. These are perfect.

I brought the engines home and set them on my kitchen counter on either side of an old red caboose. I took a picture and sent it to Whitney. Those are great, he wrote. Can you shoot them against a white background with better lighting?



It was clear that Whitney was seeking professional grade images. We were going to need studio lighting, something I don't really know how to do. But all was not lost. Without a moment's pause, I turned to another friend, Alex Plank. Alex is a fellow Aspergian, and founder of the Wrong Planet website. Through a great stroke of fortune, I actually him secured in my basement at that very moment. He had come to visit, and failed to leave. I had been feeding him for a few weeks when opportunity came knocking.

"I know all about lighting," he said, in his hundred-twenty-word-a-minute voice. You know he's excited when he talks like that. "I took lighting courses in college. This will be easy." In just a few minutes my living room was transformed to a photo set. Strobe lights and cables were everywhere. The trains sat on a straight piece of track atop two dining chairs draped in white sheet.

Everything was ready. We took our first shot. With ten thousand dollars of gear and an Aspergian Expert, how could anything go wrong? But it had. The engine on the left was white with glare, while the one on the right was lost in shadow. Alex wasn't fazed. He pulled out a reflector and stood over the trains. "Try it now," he said. The colors were balanced, but the edges of the roof were not sharp. A few shuffles of the lights, and we had it right.



Once again, I sent the photos off to New York. This time, Whitney said, Can you shoot that again without the track? Luckily, we were prepared for that request. The setup was still in place, filling most of the living room. All we needed was a white base for the trains. Alex emerged from the basement once again to come to my rescue with white foam board from the hardware store.

We shot the trains again, and this time, we knew we had it right. Whitney agreed. The cover art was set.



I hope you like my trains, but more than that, I hope you like the stories inside.

More on them later . . .(c) 2007-2010 John Elder Robison

Shopping for Autism Research

I have been privileged to see many fascinating and insightful proposals for autism research in the context of my service on the NIH and Autism Speaks review boards. In the proposals scientists share their ideas and to some extent, their hopes and dreams for future autism study.

When these proposals come in, I consider it an honor to advocate on behalf of the ones I believe have the best chance of benefiting today's autistic population. I've discussed and spoken up for al kinds of...

When Pigs Fly

This is what it looks like. Two pigs, one track. Eight legs in the air. Near forty miles an hour, some say. This is just below liftoff speed.
And the best part . . . when these two went airborne, Number Four - Tammy Fay Bacon - moved into the lead for a surprise victory that paid off eleven to one.


(c) 2007-2010 John Elder Robison

The promise of genetic research for autism

This summer, the Autism Genome Project announced the discovery of several new genes that are implicated in autism. Their report is the culmination of a study that compared genetic data from 1,000 people with autism to a slightly larger number of non-autistic controls. The results are fascinating.

The first interesting discovery is that a significant number of genetic errors in the autistic subjects were not present at all in their parents. Scientists call these spontaneous occurrences "de...

Some thoughts on concert photography

Del McCoury in concert, outdoors, Stratton, Vermont - Aug 28, 2010

People sometimes look at my photos and say things like, "I wish I had a camera that could take pictures like yours." I always answer that it's not the camera, it's how you set it and how you use it that gets the results. Last night I found myself outside a Del McCoury concert with nothing but a Canon point-n-shoot. For those who don't know him, Del is one of the greats of bluegrass music. He's been playing since before...

Reflections on Brain Stimulation and Communication

Regular followers of this blog know I've been involved with the TMS lab at Beth Israel Deaconess Medical Center in Boston. Scientists at the lab are using high powered magnetic fields to induce tiny electrical currents in the brain, thereby changing the way we think. The changes introduced by TMS are temporary, but for some of us, the are providing a foundation for lasting beneficial brain change.

This is an account written by one of the study participants last week. W__ is a ...

Affluence and Autism. Does one cause the other?

Have you seen this new University of Wisconsin study that correlates an increased prevalence of autism with greater household affluence?

This isn't the first study to reach that conclusion. But what does it mean? Many researchers dismiss research like this by saying wealthier people have more resources to get an autism diagnosis. They say more educated people are more likely to pick up subtle differences in their kids. And perhaps they're right.

Does that account for all the...

My work with Beth Israel Hospital is featured in the BIDMC news . . . .

The Latest and Greatest in Gratefulness.In Grateful Nation's Spotlight Series, well-known people from all walks of life discuss the idea of gratitude. What does it mean to them? What is its role in their lives? How has expressing gratitude improved their lives? Check back frequently to see who's contributing to the greater grateful good.

John Elder Robison - Authoring Help for those with Asperger's

For best-selling author John Elder Robison, a diagnosis of Asperger's syndrome at the age of 40...

The benefits of being an author

I don't often write of the fringe benefits of being an author, because, frankly, I do not perceive authoring to have many benefits as compared to other trades one might ply. Sailors have smuggling contacts in every port. Long haul truckers have girls in every city. Cowboys have the glory and glamour of the rodeo. Swindlers and carnival operators have marks everywhere.

What do authors have? Just books.

Yet there are times when nothing but a book will do. This, for me, is one of those time...