On behalf of Autism Speaks, Core 77, and Jovoto I invite you to join the Autism Connects design challenge for a chance to win part of a $10,000 prize pool. At IMFAR 2009 we talked about a science contest, and this is the result. We’re awarding prizes for the best ideas to help autistic people overcome communication challenges.
So what, you ask, is a communication challenge?
In this contest, the term “communication challenges” is very broadly interpreted. A technology that helps Asperger people make friends can be considered, as can a device that helps nonverbal people talk. Tell us what challenge your device addresses, and how, and you’re in.
Entries will be judges by a panel consisting of myself, Temple Grandin, Peter Gerhardt, Peter Munday, Andy Shih, Dan Feshbach, Richard Seymour, and others.
Visit the landing page for the site here
College students have been able to register for the competition for a few weeks now and we’ve had good interest with over 100 signing up. The competition site will officially go live on January 3rd for design students to begin uploading their ideas and to receive feedback from the autism liaison community we’ve been busy putting together (we have 100 volunteers who will act as liaisons to provide advice and guidance on the designs).
Here is an essay I wrote on communication, from the contest description:
Everyone with autism has some sort of communication impairment. The terms autism, Asperger’s Syndrome, or PDD-NOS describe some of its different flavors. The various conditions that make up what we call the autism spectrum differ greatly in their impact upon us, but the one diagnostic feature they all have in common is communication impairment.
All autistic communication problems stem from brain dysfunction. Autistic people can see and hear just like anyone else, but our brains may not make sense of those inputs in the conventional way. The same is true for speaking or moving our bodies to convey messages. The physical parts are all there and working normally, but we have trouble using them in the expected way due to our neurological differences.
The most obvious autistic impairment is the inability to understand or deliver speech. In our society, if you can’t understand what others are saying, you are going to be disabled. If you can’t speak for yourself – whether through speech or writing – you are going to be disabled. If you can’t do either, you are doubly disabled.
If you can’t make sense of a phrase like “Bob will pick you up at five,” how will you ever get home? The short answer is, you won’t. An autistic person who cannot understand speech might be likened to someone who speaks English in a town filled with Chinese speakers, none of whom speak a single word of English.
However, there is an important difference between a native English speaker in China and an autistic person. The English speaker has all the wiring in his brain to converse. In a matter of days, he will be working out the meaning of simple Chinese phrases. The autistic person does not have a system for learning language. So he can’t adapt. For autistic people with language trouble, understanding speech can take years. For some, it never happens.
Speech and language impairments are what we might call left-brain afflictions of autism. What about the people with right-brain issues? Those folks may understand the logical meaning of words just fine, but they cannot grasp the emotional undertone. That’s always been my problem. I have no problem with logical meanings, but the unspoken subtext – so vital in expressing emotions – goes right over my head.
For example, when I hear, “That’s just great!” I cannot tell if I’m hearing praise or sarcastic criticism. With no clue how to answer, I respond incorrectly much of the time. That’s the silent communication disability in autism. People who can’t speak are obviously disabled, and cry out for compassion. People with good command of language, but no sense of the unspoken undercurrents, are often perceived as obnoxious, arrogant, or disrespectful. Those negative reactions lead to depression, anxiety, and in extreme cases, suicide or violence.
Some people on the spectrum have a hard time expressing themselves because they are, for lack of a better word, clumsy. That may sound strange, but issues with coordination and fine motor skills can make it hard to form facial expressions or make gestures to convey a message. If you are really ungainly, your meaning may be lost in a dance of strange-looking movements, or rendered invisible with no movement at all.
Where’s Bob? He’s over there. Most of us take for granted the ability to swivel and point so that you are sure to recognize Bob. A person who can’t do that effectively is handicapped just as surely as someone who cannot utter the words. Unfortunately, many individuals who have problems controlling their bodies also have trouble forming the spoken responses, so they are doubly impaired. Physical responses are an expected part of ordinary interchange; people who cannot do that tend to be ostracized, ignored, or subjected to ridicule.
People with traditional autism – also called Kanner’s Autism – tend to have both verbal and physical challenges of varying severity. People with Asperger’s Syndrome (like me) are more likely to have impairment in reading or conveying unspoken communications. Some of us have challenges in both areas.
We now recognize that early and aggressive intervention results in far better adult language skills. That’s why we feel it’s so important to identify and address autistic communication problems as early as possible. Technology plays a key role in both the identification and resolution of childhood communication issues.
For most young people, autism therapy ends when they leave high school. One-on-one therapy is costly; few people can afford it on their own. Adult health insurance is often limited in coverage. That’s why we look to technology to help adults with communication issues. I hope to see the development of devices that assist adults with communication issues at all levels, from helping severely impaired people with basic communication to helping less impaired people interpret the subtlety of facial expressions or nuances of spoken meaning.
Tuesday, December 21, 2010
On behalf of Autism Speaks, Core 77, and Jovoto I invite you to join the Autism Connects design challenge for a chance to win part of a $10,000 prize pool. At IMFAR 2009 we talked about a science contest, and this is the result. We’re awarding prizes for the best ideas to help autistic people overcome communication challenges.
Tuesday, December 14, 2010
One of the biggest problems of Asperger people in love is that we can’t tell a false “salesman” smile from a genuine nurturing smile. One smile is delivered for the benefit of the smiler; it’s essentially predatory and self-serving. The second is delivered for us, the smilee. It’s true, open, and giving.
However, without the mechanism for instinctively evaluating other people’s facial expressions, we may use the wrong evaluation criteria. You see, the salesman is often loud and expressive in her expressions, where the true friend is much quieter and more reserved.
In the absence of working instinct, we may choose the salesman’s louder signal as the better one simply because it gets through to us where the subtle signals (those that are really true) are totally missed.
The result can be disastrous, when it comes to romance.
When we respond positively to the salesman, we are in essence accepting her pitch. In commerce, the message might be:
Look at me, I smile and make you feel good, so you will buy your next home from me and I will get a big commission.
In love, the message might be:
Look at me, I smile and make you feel good so you will fall in love with me and buy me things and give me the life I know I deserve.
There is nothing for the recipient of the smile in either of those messages. In contrast, a true message, delivered in the realm of love might be:
Look at me, I smile because I love you and I want to make you happy. When you look happy, I feel good inside.
That message implies a strongly positive and essentially equal exchange for both parties. Laid out in that manner, no rational person would choose to be in the presence of salesman smiles when he could choose a true smile instead. Unfortunately, when people smile at us in real life their expressions do not come with honest interpretive guidebooks. We have to judge with the tools at hand, in our heads; heads which are all too often inadequate for the task.
How do you recognize the genuine smile; how do you tell the person who is true from the one who sees you as a resource to be used, enjoyed, and discarded?
The first tip is that real smiles are not this black and white. Everyone has a mix of salesman and true lover within them. Even the hardest hearted salesman will give a true smile every now and then. And the truest and most nurturing person in the world will still succumb to moments of greed. So it’s a balance; we want to find a person who is mostly true.
So what do we look for?
In some cases, we can look for sudden and dramatic changes in the other person’s indicated mood. A true person, when feeling a strong emotion, will not be able to change their feelings, or their display of feeling, suddenly.
A salesman or trained actor will display any emotion required, at the drop of a hat. That's a skill that comes from one of several sources: In the case of an actor, it results from years of careful practice. In the case of someone else it may indicate a narcissist, a sociopath, or someone who is simply totally superficial. Needless to say, none of those latter things are good attributes in a potential mate.
Therefore, the “trueness” of a person whose signals change suddenly and dramatically is open to question. Tread carefully if you see this.
Another clue comes from the smiler’s other behavior. A true person will display a consistent positive attitude toward you whatever you do, within reason. A salesman, in contrast, will only like you as long as you are doing what she wants.
Ask yourself the question: Is she nice to me all the time, or only on her terms? If you suspect the latter, be wary.
Finally, you can look at the requests that accompany the smile. Are they self-serving, or altruistic?
Think of mom, who smiles and says, Smile for mommy . . . I get so happy when I see you smile! That’s altruistic, and a fair exchange.
Now think of the salesman, who smiles and says: Please will you buy this refrigerator? The smiler’s sole purpose is to sell a refrigerator and earn a commission. To the smiler, the recipient is nothing more than a source of money and a strong back to carry home his purchase.
Requests in love can be complex, but with careful observation, a pattern can often be seen.
Remember, there is always a balance. Some smiles will always be self-serving, even in the best of people. What we want to do is weed the totally or mostly self serving people out of our lives while keeping those that are true close.
Here are a few other thoughts:
True love, and the smile that goes with it, is not manipulative or controlling. True love is unconditional.
True love does not appear overnight, or after two dates, or even after a month. True love builds over time. A true person may not smile much in the beginning but smile more as feelings develop. A salesman smiles more in the beginning, and less later as your feelings develop because her purpose has been achieved and the smile is no longer needed.
True love, and the smile that goes with is, does not hurt. If a person smiles at you, and you wince inside, or wonder, what’s next, be very, very careful.
I wish I could say, read these rules and avoid the pain I’ve been through. Unfortunately, life doesn’t work that way. As a realist, the best I can hope for is that you’ll feel the same hurts I have known, and read this story, and have a flash of insight that perhaps keeps you from being hurt the next time.
As my farmer friends say:
There are some men who read the manual.
There are a few more who learn by watching.
And then there are those who have to pee on the electric fence themselves.
Which kind are you?
Wednesday, December 1, 2010
My next book, Be Different, goes on sale March 29 of 2011. I'm on the home stretch with editing right now. One part remains undone . . . the Reading and Resources chapter. And that's where I turn to all of you for help.
What are some autism books that made a difference in your life? How about non autism books that are relevant, for example, books on body language or social skill?
Do you know any schools that do a great job with our kids? How about college programs?
How about programs for teachers; graduate training or continuing ed?
What about individual speakers, doctors, therapists or psychologists who made a difference?
And what about local Asperger or autism societies or organizations?
As always, thanks so much for your help.
Monday, November 22, 2010
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 ex 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.
Wednesday, October 27, 2010
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 an American 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 had 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 . . .
Tuesday, September 7, 2010
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 research on behalf of many scientists and institutions. Yet there are some proposals I think about . . . but I have not seen.
You might say I am dreaming of research. Things I wish people would propose. Projects I’d like to see. Here are two:
1 Studying Geek Success
There is an awful lot of talk about “Almost Asperger Geniuses.” People banter names like Bill Gates, and they say things like, “One third of the science faculty at my university has Asperger’s.” It’s clear that there is a popular perception that many successful geeks are either on the spectrum or close to it. Yet those people are not disabled; far from it. Instead, they are exceptionally successful.
There are a number of screening tools that pick up Asperger/Autism personality traits that fall short of an ASD diagnosis. One good example would be Simon Baron Cohen’s AQ, EQ, and SQ tests. You can explore those tests yourself at www.cambridgepsychology.com
Why doesn’t some intrepid grad student gather a bunch of successful geeks who score high on something like the AQ, yet are successful in life, and look at the reasons for their success. Ideally, those people might be compared to a diagnosed Asperger group who has similar AQ scores yet have an official diagnosis and a disability.
If the scores are similar, what sets one group apart from the other? Why is one person with a high AQ score earning seven figures while someone else with the same score is on social security disability? Are there insights that could transfer from the more successful group to the less successful one?
Is the less successful group missing a particular set of traits? Do they have “extra” traits that make them less successful?
We talk at great length about the great things these exceptional people have brought society. Yet I am not aware of any comprehensive study that examined how this might have come to pass.
This spring, Autism Speaks funded a 25-year follow up study of people with more sever autism. The goal of that study is similar to what I describe here, but for a different population. The folks in that study are much more disabled as many had DSM III autism diagnoses. If the people at the very top of the spectrum are so successful, why don’t we try to learn how they do it and transfer that knowledge to others?
Can it be done?
I think that would be a fascinating piece of work.
2 Attacking the Environmental part of the puzzle
At the profoundly disabled end of the autism spectrum, we look at genetic defects or mutations that result in very severe autistim. In the latest studies, scientists are finding a significant number of de novo, or new, mutations.
That means the parents do not have a particular genetic problem, yet the child does.
Intuition tells us that some of these de novo mutations are caused by a complex inheritance mechanism we just don’t understand. Yet the same intuition tells us a good number of the mutations are the result of some kind of environmental trigger. Probably many environmental triggers.
I would like to see some well thought through studies to explore those possible environmental triggers for some of these newfound mutations.
This is a really hard question to attack. But it must be done.
You can look at genetic data from a disabled person’s blood, and compare his genome to that of a someone else who’s not autistic. The differences put us on the trail of genes that are implicated in the autism puzzle.
I say that as if it’s easy . . . it’s not! It’s very hard work. But we have a plan to attack the problem, and it’s being attacked on many fronts right now. That’s why we are moving faster on the genetic side than the environmental side . . .we know how to attack the problem and get results.
Yet that’s only part of the puzzle. We’re finding mutations, but it’s much, much harder to figure out how they came to be. Where do you start?
You can subject developing cells to bombardment from chemicals, light, noise, magnetism, radiation . . . there’s no limit to the environmental contaminants we can assault cells with. The problem is knowing which bombardments are happening to real people, and which cause damage?
How do we know what’s really happening out there in the world?
We’ve implicated some chemicals in recent years, and ruled out others. We are nowhere close to answering this fundamental question.
I think the environmental question needs to be attacked on the public health/statistical analysis front first. Where are the “pockets of autism?” I hear about school districts, counties, parts of Silicon Valley, and other places in the news. What’s real? What does the statistic data suggest in terms of exposures or agents?
I don’t know how these environmental studies should be structured. But Hesh on the Sopranos had it right when he said, “I don’t know how to write the songs, but I know a hit when I hear it.”
I feel the same way. Bring me a hit for environmental research.
Monday, September 6, 2010
Saturday, September 4, 2010
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 novo." Are de novo errors a result of environmental factors that affected the developing fetus, or are they caused by an inheritance mechanism that we just don't understand yet? We don't know, but many scientists are working to answer this question right now. Researchers have now identified a number of genes that are implicated in autism. Some of them are also implicated in other conditions, like intellectual disability. That leads scientists to the realization that a number of psychiatric conditions may have similar biological foundations. The genes implicated in autism affect us in very different ways. Some genes change the balance of gray and white matter in our brains. Others affect the way our brain cells signal each other. Others affect the rate at which our brains grow and develop. Even if the observed result - an autistic person - looks similar, the biological causes of disability are not the same at all. We're beginning to realize that autism is really a catchall phrase for a number of brain differences that happen to look similar when seen from the outside. What does that mean for the concept of neurodiversity; the idea that autistic people should be accepted but not "fixed?" For one thing, it may explain why some autistic people have a combination of gifts and disabilities, while others are seen or see themselves as disabled; the underlying cause of their particular autism has conferred no discernable benefit. The autistic population may indeed consist of several distinctly different subgroups. One group may indeed be best left alone. They can make great contributions to society vie their unique way of thinking. At the same time, we have another population who is profoundly disabled and in need of substantial help. If those two groups are separated by fundamental genetic differences it's no surprise they would have totally different treatment or accommodation needs. One group consists of people who are stable and potentially successful despite being "different." Those folks need accommodation, behavioral counseling, and societal support. The other group is indeed in search of a cure for something that provides them no benefit and a substantial measure of disability. So is a cure for those people on the horizon? Is that where this genetic research is leading? The answer is . . . maybe, and we hope so. We have made a huge step by learning that certain genetic defects cause profound autistic disability. What we need to figure out now is how to help the affected population. So far, we do not know how to repair damaged genetic data; we can only treat the results. For example, if a particular genetic defect causes the body to make too much or too little of a particular chemical the brain needs to function, we may be able to fix that situation with medication. There is tremendous promise but we have a long way to go. The biggest complication is that we have so many different genetic problems to deal with. Even though they produce a similar outcome - autism - they work in very different ways at a biological level. None of the "autism genes" we identified so far are present in more than one to two percent of the autistic population. There is no such thing as a single "autism gene." Rather, there are many genes that push us toward autistic outcomes when they go wrong. That means we may have to develop ten or even a hundred different treatment strategies, to address the multitude of genetic errors that lead to autism. How do we begin? Genetic testing may allow us to identify babies with gene defects that will lead to autism before their brains have developed on the autistic pathway. If we intervene early enough, we may be able to head off autism in those children. How would we do that? We might use drugs to speed or slow development, or replace chemicals the baby is not making for himself. We might use new therapies like TMS to change plasticity in the developing brain. There is tremendous promise, especially in the case of genetic errors that lead to the most severe autism. In my earlier writing I have discussed the philosophical issues that surround treatment of autism in children. I used the example of a kid who was a social cripple, friendless; but a computer genius. If we had a treatment to turn on social awareness for that child, should we do it? He would surely be happier, but at what cost? Would we be turning the future Einstein or Newton into a jolly friendly sales manager? What are the ethical and social implications of such a power? That remains a valid question at the upper end of the autism spectrum. However, those kids won't have the genetic errors that lead to profound disability. If we treat children who have a genetic abnormality that leads to an IQ or 50 and total disability, we do not make any ethical tradeoff at the other end of the range. Instead, we give a child who might have grown up crippled a chance to develop reasonably normally. There are plenty of "good sides" to autism like mine. That's why I don't want a "cure" for myself. At the same time, I recognize the autism spectrum is very broad, and people at different points on it may feel very differently, as might their parents. If people like me represent one extreme of the spectrum, the other end comprises significant disability. There is no good side to a rare genetic defect that results in an autistic child who can't talk or take care of himself. An IQ of 50 does not confer any hidden benefit; it's crippling, pure and simple. The ability to tell our different forms of autism apart will open the door to many treatment options in years to come. Plenty of gifted autistics will choose to stay as they are, but we all share a duty to those who want help. The promise of using genetic knowledge to head off the most severe autism in infancy is tremendously exciting to me, and to many researchers in the field. * * * I am an autistic person who serves on review boards for the National Institutes of Mental Health and Autism Speaks, the two largest sources of autism research funding. In my work on the scientific review boards, I seek to advance science that offers hope for improving the lives of today's autistic population, and the as-yet-unborn population to come. Genetic research is a poorly understood and controversial area of autism study; one I hope to elucidate a bit more clearly with these writings.
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 novo." Are de novo errors a result of environmental factors that affected the developing fetus, or are they caused by an inheritance mechanism that we just don't understand yet? We don't know, but many scientists are working to answer this question right now.
Researchers have now identified a number of genes that are implicated in autism. Some of them are also implicated in other conditions, like intellectual disability. That leads scientists to the realization that a number of psychiatric conditions may have similar biological foundations.
The genes implicated in autism affect us in very different ways. Some genes change the balance of gray and white matter in our brains. Others affect the way our brain cells signal each other. Others affect the rate at which our brains grow and develop. Even if the observed result - an autistic person - looks similar, the biological causes of disability are not the same at all. We're beginning to realize that autism is really a catchall phrase for a number of brain differences that happen to look similar when seen from the outside.
What does that mean for the concept of neurodiversity; the idea that autistic people should be accepted but not "fixed?"
For one thing, it may explain why some autistic people have a combination of gifts and disabilities, while others are seen or see themselves as disabled; the underlying cause of their particular autism has conferred no discernable benefit. The autistic population may indeed consist of several distinctly different subgroups.
One group may indeed be best left alone. They can make great contributions to society vie their unique way of thinking. At the same time, we have another population who is profoundly disabled and in need of substantial help. If those two groups are separated by fundamental genetic differences it's no surprise they would have totally different treatment or accommodation needs.
One group consists of people who are stable and potentially successful despite being "different." Those folks need accommodation, behavioral counseling, and societal support. The other group is indeed in search of a cure for something that provides them no benefit and a substantial measure of disability.
So is a cure for those people on the horizon? Is that where this genetic research is leading?
The answer is . . . maybe, and we hope so.
We have made a huge step by learning that certain genetic defects cause profound autistic disability. What we need to figure out now is how to help the affected population. So far, we do not know how to repair damaged genetic data; we can only treat the results. For example, if a particular genetic defect causes the body to make too much or too little of a particular chemical the brain needs to function, we may be able to fix that situation with medication.
There is tremendous promise but we have a long way to go.
The biggest complication is that we have so many different genetic problems to deal with. Even though they produce a similar outcome - autism - they work in very different ways at a biological level. None of the "autism genes" we identified so far are present in more than one to two percent of the autistic population. There is no such thing as a single "autism gene." Rather, there are many genes that push us toward autistic outcomes when they go wrong.
That means we may have to develop ten or even a hundred different treatment strategies, to address the multitude of genetic errors that lead to autism. How do we begin?
Genetic testing may allow us to identify babies with gene defects that will lead to autism before their brains have developed on the autistic pathway. If we intervene early enough, we may be able to head off autism in those children. How would we do that? We might use drugs to speed or slow development, or replace chemicals the baby is not making for himself. We might use new therapies like TMS to change plasticity in the developing brain. There is tremendous promise, especially in the case of genetic errors that lead to the most severe autism.
In my earlier writing I have discussed the philosophical issues that surround treatment of autism in children. I used the example of a kid who was a social cripple, friendless; but a computer genius. If we had a treatment to turn on social awareness for that child, should we do it? He would surely be happier, but at what cost? Would we be turning the future Einstein or Newton into a jolly friendly sales manager? What are the ethical and social implications of such a power?
That remains a valid question at the upper end of the autism spectrum. However, those kids won't have the genetic errors that lead to profound disability. If we treat children who have a genetic abnormality that leads to an IQ or 50 and total disability, we do not make any ethical tradeoff at the other end of the range. Instead, we give a child who might have grown up crippled a chance to develop reasonably normally.
There are plenty of "good sides" to autism like mine. That's why I don't want a "cure" for myself. At the same time, I recognize the autism spectrum is very broad, and people at different points on it may feel very differently, as might their parents. If people like me represent one extreme of the spectrum, the other end comprises significant disability. There is no good side to a rare genetic defect that results in an autistic child who can't talk or take care of himself. An IQ of 50 does not confer any hidden benefit; it's crippling, pure and simple.
The ability to tell our different forms of autism apart will open the door to many treatment options in years to come. Plenty of gifted autistics will choose to stay as they are, but we all share a duty to those who want help. The promise of using genetic knowledge to head off the most severe autism in infancy is tremendously exciting to me, and to many researchers in the field.
* * *
I am an autistic person who serves on review boards for the National Institutes of Mental Health and Autism Speaks, the two largest sources of autism research funding. In my work on the scientific review boards, I seek to advance science that offers hope for improving the lives of today's autistic population, and the as-yet-unborn population to come. Genetic research is a poorly understood and controversial area of autism study; one I hope to elucidate a bit more clearly with these writings.
Sunday, August 29, 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 I was born, but he’s still vital and dynamic and full of zip. Nowadays, he’s joined on stage by his sons as he performs all over the country.
I had a choice: Drive back and get a “professional” camera, and miss most of the show, or shoot pictures with what I had. I chose the latter, and in making that Canon camera work, I recorded what I did for those of you who want to shoot your own nighttime concerts.
I began by switching off the camera flash. Flash on small cameras is meant to provide supplementary illumination for subjects five to ten feet from the camera. If you use flash to take a concert photo from the audience, the light will not even reach the stage, and the image will be black. If you are lucky enough to be really close, the flash may hit the closest performer, bathing him in an ugly white glare and leaving everything else black. The colors and shadows cast by the stage lighting are an integral part of most shows; you lose that when a flash is used.
Next, I selected manual metering mode and used the dials on the back of the camera to set film speed and exposure. For my Canon G10 I chose a sensitivity of ISO 800. I set the widest available aperture – f4.0, and a shutter speed of 1/60 of a second. That’s a reasonable rule of thumb set of settings for most cameras and most concerts. You can shoot a few shots with those settings and adjust as needed to get the exposure right for your particular venue.
I usually shoot concerts with daylight white balance, which gives a reddish cast to the images, because that’s how they seem to me in real life. You can try incandescent white balance and see what you prefer. There’s no exact answer because you are shooting performers under colored light so the shading is a matter of artistic interpretation, as opposed to absolute color accuracy.
Point and shoot cameras are notorious for being really slow to respond when you push the shutter button. However, I find that my Canon responds quite a bit faster when it’s in manual mode; probably because it does not have to do a bunch of exposure calculations before each shot. The faster your camera responds, the more likely you are to catch a good shot.
That covered the setup; next comes composition.
I try to shoot a mix of vertical and horizontal compositions. If you are shooting one person, up close, a vertical (portrait) composition is often best.
If you want to back off and shoot the whole stage you’re usually better off with a horizontal (landscape) format.
When you shoot verticals from up close pay attention to the performer’s position relative to the microphone. Try to find a shooting position where you get a clear shot of the face without a big mike in the way.
In the example above the mike is in a pretty unobtrusive place. Having the mike in the frame gives the shot context but I've learned to keep it away from the faces as much as possible.
Another thing to keep in mind is the instrument. If the performer is playing a guitar, it’s usually best to try and keep the whole neck in the frame. If you have a shot where the end of the neck is cropped out of the frame, it’s sort of like a shot where the person is cut off at the knees . . . it just looks wrong.
Think about where to shoot. At most shows the best shots are had from right in front of the stage, and if there’s no security, you may be able to just edge up there and shoot away.
Consider alternate locations, too. For example, you can get interesting shots from the sides of rear of the stage.
It’s a lot to think about. You have to pay attention to the exposure settings all night. If the light changes, you have to adjust your camera. You have to remain on the lookout for good shots; the best results come when you stand and wait for the good shots to come to you. That’s what I do. Lots of times the performers see me and they begin to play to me, leading me to better and better compositions as the night goes on. Of course, this isn’t always the case. Some performers don’t like being photographed and they’ll become nasty or obstreperous.
The last step is post-production. I download my images into Adobe Lightroom where I catalog my images with keywords and make adjustments to exposure and framing. I can also correct color balance there.
Most of these tips are relevant no matter what kind of camera you have. As you can see, I got pretty acceptable results with an inexpensive pocket camera; they would have only been better with better gear. But that’s not always true . . . many times they will not let you in to concerts with professional looking gear but you can walk in and shoot all night with a camera like the G10 (or its successor the G11)
Try these tips next time you’re at a concert and let me know what you think.
Tuesday, August 24, 2010
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 single female professional, about my age, with Asperger’s. Why do I describe her that way, you ask? I say she’s single because she lives alone. That means the changes she experienced had to be obvious enough that a person would feel them all by themselves. I point out that she’s my age because older people seem to get more from these TMS experiments by their own accounts, even though the test results from the lab show young people improve just as much or more. Why would that be? I don’t know.
I think her insights are fascinating. I hope you find them interesting too. Anyway, on with her story. . .
Last week, I had an opportunity to participate in a study at Beth Israel Deaconess Medical Center with Dr.'s Lindsay Oberman and Shirley Fecteau. They were stimulating certain areas of the brain that affect communication.
I had a remarkable revelation during the study. I was actually able to see and hear what it is that neurotypical people see and hear during social interaction. For the first time, I was able to understand what emotions people’s facial expressions were conveying. I was able to understand the tone of voice that the person was using, and what it really meant. For example, I was able to understand sarcasm, which I normally do not pick up.
This week, I see the world completely differently. I was able to understand the facial expressions and meaning behind the expressions. I was able to hear the subtleties in the tone of voice. I was able to understand that the words being spoken were not literally true, but that their true message was still clearly conveyed. I usually hear the literal meaning of the words as the main message. However, I now recognize that the literal meaning of the words was not the main message. There were many more layers of meaning in the conversation which were conveyed by expressions and tone of voices, which I did not pick up at all last week.
The best way to describe the experience this week was that it was congruous. It felt right. It felt comfortable watching people interact, and I felt like I understood what was happening. Last week, there was anxiety while watching an interaction and then trying to answer the questions about it. This week, although there were a few interactions that I wasn't clear about, overall I felt like I really understood what was going on.
After seeing how differently my brain was working after the stimulation, it was clear that my brain usually focuses about 90% of my attention on the literal meaning of the words being spoken. Before this stimulation, I thought that I was able to understand people's facial expressions and their tone of voice fairly well. However, after seeing the difference following the stimulation, I would say that I miss at least half the real content and meaning of ordinary social conversation.
If somebody says something sarcastically, I may completely miss their intention. When people are being sarcastic, my mind tends to focus on the literal meaning of the words. If they are being blatantly sarcastic, I can understand that they don't intend the literal meaning of their words. However, my mind still tends to focus on the words said, even though I understand that's not their intention. In most cases, this feels quite uncomfortable.
If people are not as blatantly sarcastic, I think I sometimes pick up something in the way they are talking which doesn't sound quite right. The tone of voice doesn't quite match the literal meaning of the words which my brain is interpreting. This also causes confusion and unease.
If someone is being sarcastic, but is speaking with a very straight face, I simply hear the literal meaning of the words and don't understand their intention at all. It seems to me that this is one of the main problems with a social interaction where someone is kidding me. I hear the literal meaning of the words, which sound as though the person does not like me, or does not wish me well. I don't hear the intention behind it, which is being conveyed by their face or their voice.
After seeing so clearly all of the aspects of communication which are conveyed by facial expression and tone of voice, I certainly understand why many people with Asperger's have social anxiety. In some ways, it is as if you are in a foreign country, and aren't completely fluent in the language. The people speaking to you don't know that you don't speak the language, and they expect you to understand what is being said. Your experience is one of trying to understand what is being said, and having to translate what is being said so that you can understand it. It can be anxiety provoking when people expect you to be able to react in a way which you are not able to do. There's certainly a lot that gets missed or misunderstood. It's also very tiring to have to constantly try to figure out what is being said, and to be wrong too much of the time.
I have great hope now that the researchers are finding some specific areas of the brain which are affected in autism spectrum disorders. As they are able to refine the stimulation techniques, they may be able to influence the brain in ways that can permanently improve communication. As I have just seen, this could be a life-changing experience for many, many people.
Posted by John Elder Robison at 10:00 PM
Wednesday, August 4, 2010
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 difference?
The incidence of autism combined with intellectual disability is not strongly (1.3 to 1) correlated with affluence. It’s only the less severe forms of autism that are more common in wealthier homes. Is that because autism combined with ID is obvious, but the less severe condition is not?
Maybe . . . but maybe not . . .
Researchers note that intellectual disability by itself is inversely correlated with family affluence. That is, the more prosperous the family, the less likely they are to have an ID child. Knowing that, even a 1:3 to 1 correlation in the opposite direction may be suggestive of an unrecognized autism-affluence dynamic, even for the most severely affected kids.
The difference in non-intellectually-disabled kids is truly striking. For kids with autism, but without ID, there was almost a 3:1 ratio of autism in the highest socioeconomic group versus the lowest group. That’s a pretty shocking ratio.
This study has some pretty profound implications.
If it’s true that most of this 3:1 difference is due to more aware parents with better resources, then it follows that two out of three poor children with autism are going undiagnosed.
Sobering thought, isn’t it?
Seen in that light, I find it hard to jump to the conclusion that we’re failing to diagnose two out of three kids with higher functioning autism. I think the truth lies somewhere in the middle . . . there is some unknown reason that high functioning autism is associated with affluence, and we are still failing to diagnose a significant chunk of our less affluent population.
The researchers in this study seem to feel the same way.
This newest study attempts to address the question with some new methodologies. They looked at roughly half a million kids in a database compiled by the Centers for Disease Control, some of whom were diagnosed by doctors while others were diagnosed through schools. Some children had a pre-existing autism diagnosis, while others’ records were evaluated as part of this study.
Here’s the interesting thing:
No matter how you cut the study results, there is always a significant correlation between the incidence of autism and family affluence, even for kids who came into the study with no diagnosis. That sure suggests that there is some underlying reason that more affluent people are more likely to have autistic kids.
Do you remember Steve Silberman’’s Geek Syndrome article from Wired Magazine, some years back? It looks like he had it right . . .
I had actually not thought about that story recently, but my son and Alex Plank interviewed Steve about that at this year’s Autreat conference. You can see their videos of Steve here:
Why might affluent people tend to produce autistic kids? What do you think? Why might more affluent people be more likely to have kids who are “different?”
A significant percentage of our affluent population became financially successful by thinking differently. Some of those people invented new things. Others solved problems that defied solution. A few devised novel strategies to analyze markets. What do those people have in common? They think “differently.”
Some people who think “differently” are just ordinary folks with a different thought every now and then. Others, however, are different all the time because their brains are different. Fifty years ago, such people were called eccentric. Today, more and more of those individuals are called autistic, or Asperger’s.
It’s an interesting thought . . . most adults with autism are not successful financially. They are disabled, and poor. Yet a significant percentage of highly successful people in engineering, analysis, and the sciences have autistic traits. Does a little bit of autism make you exceptionally successful, while a lot makes you exceptionally disabled?
I think so.
At the same time, our society has created institutions where geeky people with autistic traits congregate. Biotech companies. Electronic design firms. Research labs. Even Wall Street firms with their rooms full of mathematical savants. It should come as no surprise that males and females meet in those environments, and children result. To the extent that autism is genetic, we have created a unique environment for genetic reinforcement in those institutions.
What else is different, for affluent kids, and how might those differences lead to autism?
And what about the less affluent kids who are going undiagnosed? That is the less discussed but equally important finding of this research. How are we going to identify these kids so we can get them the help they need, and more important, where are we as a society going to get the money to pay for it with schools and autism service groups nationwide in a state of fiscal collapse?
Thursday, July 29, 2010
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 was something of a revelation, explaining everything from the social isolation of his youth to his penchant for electronics. With this new insight into his life, Robison discovered that he could help others with the condition, an autism spectrum disorder. Writing his bestselling memoir Look Me in the Eye (with the sequel to come in April 2011) and speaking publicly about his own experiences has earned Robison international recognition and caught the attention of BIDMC neurologist Alvaro Pascual-Leone, M.D., Ph.D Click here to be inspired by John's story.
With this knowledge, we created Grateful Nation, an interactive community that gives grateful people the opportunity and resources to connect and give back.
Hopefully, one thanks will lead to another, and we'll create an unending positive cycle of gratitude. Practice gratitude today by visitingwww.gratefulnation.org.
© Copyright 2010 Beth Israel Deaconess Medical Center | 330 Brookline Avenue, Boston, MA 02215| 617-667-7330
Sunday, July 18, 2010
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 times.
It all started with a windstorm, back in June. The wind took down trees all along Harkness Road, and I headed out to cut them. The trees were not particularly big, and the work was not terribly hard, but something went wrong. The day after clearing the brush, I could barely walk. I’d sprained my knees before, but this was worse.
I waited a month, hoping things would improve, but they didn’t. I actually got worse. With great reluctance, I made an appointment for an MRI. My friend Joe Polino was the radiologist on duty that day, and he showed me the problem on the monitor, among shadowy outlines of leg bone and tissue. That’s a big tear in your medial meniscus, he said. It’s not going to get better. You need surgery.
Off I went to John Corsetti, the orthopedic surgeon. He greeted my wounded knee with the greatest of enthusiasm. We like cases like these, he said, because your pain is right where the MRI shows the damage and there’s no sign of any other trouble. That means you have a really high likelihood of a good outcome. But no matter what my likelihood, I did not have much choice, the way I felt.
I submitted to the carving knives Thursday morning.
I was due at the hospital at eight o’clock sharp, and I went, tremblingly. If I lived, I’d be home by noon. Or so they said. I was very worried, having never done anything like this before. But it went well. I remember was the anesthesiologist telling me to breathe deep, and a moment later I awoke in the recovery area with a big white sock covering my leg.
I was indeed able to return home for noon. When I got there, a remarkable gift was waiting. My editorial assistant – Stephanie Chan – had sent me a big box of books. That was just what I needed, in my newly disabled and drug-addled state. As soon as the Percocet wore off, I began to read.
Kings of the Earth, by John Clinch . . . All I’ll say about this wonderfully gritty tale is that I remember the people he wrote about, from my own childhood in rural Georgia. I highly recommend this book.
No Angel tells the story of Jay Dobyns and his multi-year investigation into the Arizona Hells Angels as an agent for the ATF. It’s a well-told tale, one that brings back memories of life with outlaw bikers from my own past. Only one thing about this book troubles me, and that has nothing to do with its writing. After reading about these guys lives, I can’t help but wonder . . . what are we doing spending millions of taxpayer dollars to infiltrate them and ultimately throw it all away with bungled prosecutions? Why are we there?
The Lost City of Z is David Grann’s story of the fabled city of Z that’s supposed to be hidden in the dark heart of the Amazon. The book doesn’t tell you where to find it, but I know it’s out there still . . . I thought back to a trip to southern Mexico with Cubby and his mom years ago. We stood on the summit of a pyramid at Tonina, a remote archaeological site near the Guatemalan border. Peering from the top I saw wooded hilltops all around, as far as the eye could see. Those are probably all unexplored pyramids, our guide said. We have not even uncovered one percent of the history hidden here.
Then I tool a break from Random House to read two old Elmore Leonard books, and after reading No Angel I had to read for Hells Angles President Sonny Barger’s new book, Let’s Ride.
Then I turned back to Stephanie’s box . . .
Priceless tells the story of Robert Wittman, who founded the FBI’s Art Crime team and solved some of the biggest thefts in American history. I never thought of art that way, but as he points out early in the book, the Gardner Museum Heist was the biggest property crime in US history. I’m in the middle of Wittman’s book tonight, and really enjoying his tales.
Next is the Oprah bio, a big bestseller from the spring.
After that, I have Did LSD Kill JFK?
Escape from the Land of Snows
and the Immortal Henrietta Lacks. I may actually get mobile again by the time I finish these titles . . .
Tuesday, July 13, 2010
Last Sunday I had dinner with the Jeffways. We always have a good time together, and sometimes bizarre and exciting things happen. Readers of Look Me in the Eye may recognize the name . . .Bob and I were engineers together, back at Milton Bradley. I met Bob, Celeste, and three of their five kids at Joes Pizza for a fine meal of pizza and spaghetti. Afterwards, we went in search of their daughter Alex at a local ice cream establishment.
We found her sitting with two girlfriends at the Florence Friendly’s. The females had just begun ingesting ice cream treats as we sat down around them. Alex is normally jolly, but at that moment they were focused on food and the sight of us made her focus even harder. Halfway through her sundae, Alex paused. For some reason – we may never know why – she glanced down at her spoon. That’s when the shrieking started.
Buuuuuuuuuuuuug! Normally a three letter word, Bug was stretched and extended for high volume delivery. It was like a song, but off key and obnoxious. The other patrons turned to see what was going on.
What was she yelling about? Alex was, after all, a teenage girl. She was right at the age where unpredictable audio emissions just occurred. But I saw it wasn’t just her . . all three table mates were showing signs of extreme agitation. Something was up.
I had seen responses like that in the past, when I was standing at a crowded bar, and an inebriated patron sprayed vomit across the room. But no one had vomited tonight. Yet.
I looked closer. Still, the source of their distress remained invisible. Yet the table was erupting. The three girls were wriggling and squealing. The only guy was reaching for something in his pocket. A bottle? A gun? A phone?
Seconds later he was pointing a camera at Alex’s sundae. Following the camera’s aim, I saw the creature. Half an inch long, vile, and black. Emerging from beneath the fudge. Check him out:
The verminous thing stood defiantly atop a curl of chocolate, under the harsh fluorescent light. Insect King of the Sundae dish. All at once, everyone had something to say.
Bob observed that the Mexicans dip insects in chocolate and sell them
I was glad I had not yet eaten anything served by that particular establishment.
The girls all said, Gross!!
Mary, the youngest Jeffway, offered up the bug with a smile, but there were no eaters
The waiter said, I’m just glad it’s my last day here. So I don’t care.
Alex backed away from the food. Her half-eaten dish sat on the table. In fact, all the dishes sat on the table. People’s enthusiasm for dining had gone. Or more likely, their confidence in the restaurant food supply had evaporated. After all, if their ice cream was infested, what could you expect in the foods that are more prone to spoilage. I shuddered at the thought.
The abandoned table . . .
Everyone else wondered how many insects they’d eaten, before this one got out alive? Other diners gathered round for inspection before fading quietly into the night. All over the restaurant, tips were quietly recalculated.
In the midst of it all, the waiter presented the check. What a minute, I thought. A check? For verminated food?
I sought out the manager. “It’s policy, she said. If there’s a bug in your ice cream, you don’t have to pay for it. But you still have to pay for the rest of the food.”
I thought about that a moment.
Does this happen often enough that you have a regular policy for it?
Well, she answered, it does happen. And that’s what my manager told me to do. I took her picture, but she was too ashamed or scared to face the camera.
Meanwhile, the establishment had emptied out.
With some reluctance, we paid and left.
What might you have done differently, had it been your restaurant? What can my fellow eaters learn from this? What will you do, the next time you are served vermin with ice cream?
Send it back?
Friday, July 9, 2010
Are you thinking of publishing a book? If so, you’re probably wondering how to stack the odds in your favor, in terms of market success. And if you’re not thinking that, you should be. Why? There are three hundred thousand new titles published every year in America. Of that, no more than a few hundred make the New York Times list.
But that’s not the worst of it . . . most bestsellers are written by authors who wrote bestsellers before. In any given year, fewer than fifty debut authors break out into the mainstream lists. If you want to be one of them, you need more than great writing.
You the right story at the right time, shaped in the most compelling way. Armed with that, you must catch the interest of a fickle public, and for that to happen fast enough to make a bestseller, you need the power of the media behind you. I’d like to tell you about a friend who might be able to help you out . . .
Let me introduce Steve Ross, the publisher who discovered Look Me in the Eye and many other huge bestsellers. Steve headed Crown Publishers back in 2007 when I took up the book writing trade. He left Crown before my book came out, but I credit him for having the vision to acquire the title – something that took a lot of vision and courage, since I was a complete unknown.
My book would never have been the success it is, if not for his original vision, and the work of the team he assembled to bring it to market . . . Rachel Klayman, my editor; Tina Constable, who took over Steve’s role when he left; Whitney Cookman, who created the wonderful cover; and all the marketing, promotion and production people who brought my story to the world.
Steve Ross left Crown to run one of the divisions of HarperCollins, but his position went up in smoke when the economy imploded in 2009. Since then he’s been consulting with authors on his own. In today’s Publisher’s Weekly, I see that he’s formalized this new career by taking a new position at the Abrams Artists Agency.
To quote PW’s Rachel Deahl:
Ross has been running his own author services business since last February, when HarperCollins closed the unit Ross was president and publisher of, Collins. Starting July 12, Ross joins Abrams, working both as an agent and heading up the company’s newly formed Abrams Author Services.
Ross will be director of the book division and will, as he explained, be bringing the consulting business he’s been overseeing to Abrams. While Abrams currently handles some books—Maura Teitelbaum is the sole literary agent there—Ross said the company, which he described as “solidly entrenched in other talent management,” is looking to sign more authors.
Ross . . said Abrams Author Services will offer the same kind of package he’s been delivering to his clients, which means guiding authors in the editorial process and helping them with everything from title selection and jacket design to deciding on the best distribution option. As a result of the consolidation and cutbacks at the big six houses, Ross said, agents are finding it harder and harder to sell books they would have easily placed five years ago. This, in tandem with the growth in distribution/delivery options, means, he believes, that there’s a greater wealth of worthwhile books that have an audience but no major publisher.
Ross . . will be working from Abrams’s Seventh Avenue office in Manhattan. He can be reached at email@example.com.
Give Steve a shout, and if he puts together a deal for you, be sure and let me know.
Here's the announcement from Publisher's Weekly
Here's the press release from Booktrade