Look Me In The Eye

Writing Retreats in Beautiful and Peaceful Places

noreply@blogger.com (John Elder Robison) — Wed, 20 Mar 2013 06:48:00 +0000

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

How do you know if you're on a good path?

noreply@blogger.com (John Elder Robison) — Sun, 17 Mar 2013 18:50:00 +0000

How indeed?

I have 25 years invested in my business, Robison Service. It's like a child to me. Yet I can only be there part time, because of my other commitments. I worry when they struggle, and blame myself. I wish I was there more. I wish I could run it more capably.

I began this writing career, but the book industry is changing just as the music industry did. It's not clear whether I can derive much of my support in a world where so much content gets out for free.

I feel a great desire to help others growing up or living on the autism spectrum. To that end I serve on boards and committees, where I try to push for beneficial change. Do I succeed? Only time will tell.

Then there are the groups I speak to. They seem to appreciate what I do, and to the extent such engagements come along, they are great. Speaking takes me all over the world and my efforts seem appreciated. That much seems like a win win situation

What about the photography? People often ask why I dont do a book of my photos. But making a book is a vast undertaking, and photo books don't sell many copies as a rule.

Like most people, I have many choices for how I spend my time. I want to do good, but I want to feel economic security too, and I don't anymore. It's so hard to strike a balance, to know the best way to proceed.

Can we ever know?

On The Road Again - the RAISING CUBBY tour

noreply@blogger.com (John Elder Robison) — Sat, 16 Mar 2013 18:18:00 +0000

I've got a lot of travel ahead of me these next few months as I travel for the release of my new book - RAISING CUBBY. It's the story of a dad (me) his kid (Cubby) and tractors, trains, a touch of Asperger's and a sack of explosives.

The book will reveal many secrets parents need to know, including:

- Where kids come from

- The truth about Santa

- Where he gets the coal

- How to drive a locomotive

- What to do with your kid on a Sunday afternoon

It's truly parenting at its very best.

Here's what's happening the next few days:

Saturday and Sunday: Watch Cubby and me on the Sanjay Gupta Show on CNN, Saturday at 4:30 and Sunday morning at 7:30

Monday - Join me at Vromans of Pasadena, 7PM

Tuesday - Book Passage of Corte Madera, 7PM

Wednesday - Capitola Book Cafe, Capitola, 7:30PM

Thursday - Hennepin County Library, Minneapolis, 7PM

The following week sees me at Danville College in Danville, KY

April 1st will be celebrated with a program in the Campus Center Auditorium, University of MA, Amherst.

April 2 is World Autism Awareness Day and I will ring the opening bell on the stock exchange. Look for more details next week . . . .

Canada is coming in April, Australia is slated for August.

See you on the road

John

The Imperial War Pug

noreply@blogger.com (John Elder Robison) — Mon, 11 Mar 2013 16:19:00 +0000

Earlier today a television interviewer asked me some questions about War Pugs. As a long time Pug fancier I did my best to satisfy his curiosity but I realized there may be more people out there with questions. So I’ve set down this brief set of facts, tidbits, and trivia . . .

I’m often asked what the correct name is. Are they Imperial Chinese War Pugs, or simply Imperial War Pugs? In the western world it’s become common to add “Chinese” to the name, but in earlier times, they were simply Imperial War Pugs. There was no need to name China, because it was already known as the center of the world, and the home of the Emperor.

Everything changed with the arrival of the British invaders, off the Port of Hong Kong, 150-some years ago today.

People often ask the difference between a common pug and an Imperial War Pug. Basically it comes down to this: The Imperial War Pug is the pure line. The common pug – purebred as it may be, is a lesser creature.

The difference is readily apparent to an expert, as any dog show judge will attest. The War Pug has finer features, greater intelligence, and a cleaner odor when wet. It is, as they say, all a matter of breeding and culture.

Pugs of all sorts were unknown in the western world prior to the sacking of the summer palace by British soldiers in 1861. At that time soldiers captured some animals and took them back home as pets, not knowing their importance in Chinese society. After that, it was as if a dam had broken. It seemed like every China clipper captain had to have a pug, and an underground trade was quick to develop, despite the Imperial prohibitions on sale of the animals to the West.

Imperial War Pugs were long the property of the Emperor, who gave the animals to his favorite generals as a token of respect and appreciation. Common pugs – from whom the Imperial line was derived – were frequently kept by Chinese nobility but always forbidden to the common man.

In fact, a Chinese serf found in possession of a Pug might well be immediately put to death by the sword. As you can imagine, the sight of a Pug running loose in a village – rare as that may have been – was enough to inspire terror in the hearts of the peasantry, who lived their lives in the shadow of the Emperor. “Fear this, and tremblingly obey,” were the closing words of every Imperial proclamation, and the phrase was backed up with the threat of immediate decapitation. Even handling a Pug might subject the offender to punishment. The loss of a "hand that petted" was not at all uncommon.

Pugs were not to be trifled with.

Most pugs raised by breeders today are derived from the common pug stock that was acquired from traders in the 1880s, often as part of an exchange for opium. Many a pug dog sailed for a new home in the China clippers of the late nineteenth century. True descendants of the Imperial line are rare, and justifiably coveted.

When people hear the name – Imperial War Pug – they may mistakenly assume the animals are vicious. Far from it. War Pugs are peaceful creatures, devoted to a life of Zen and meditation. The image of a War Pug, meditating atop a field of fallen soldiers, is indeed iconic in Chinese literature of the early period.

War Pugs – like good generals – know war is always a last resort, and never desirable. Some say the Pugs acted to calm their masters; many of whom were not otherwise known for mercy on the battlefield.

When a general died it was common for his Pug to be buried beside him; hence their discovery in tombs. It was also common for likenesses of the Pugs to be carved from stone, and many tombs feature both soldiers and War Pugs – carved from living rock – both guarding their masters for all eternity.

Today most War Pugs live lives of leisure, passing their days on sofas and pillows. Few are called upon to reflect on the brutality of war. But they are there, ready, and we might be well advised to give them to our own generals, in Iraq and Afghanistan, as they search for peace in those troubled lands. Perhaps the Pugs could show them the way, as they did for so many years in China.

Tugs

noreply@blogger.com (John Elder Robison) — Wed, 13 Feb 2013 15:38:00 +0000

Cubby moved the throttle forward and the rumble of the engine increased. Below us, the deck began to vibrate as the old tug felt the strain of pushing. The water behind us roiled as the propeller bit in, ten feet below. Far above us, two seamen looked down from the stern of the tanker. Slowly but steadily, the big ship began to turn.

“Two thousand horsepower, and you can barely see her moving,” the mate said with wonder. At least we weren’t going backward anymore.

Cubby looked down at the milk crate I’d stood him on. “You’re doing fine,” the captain said, and he smiled happily. He leaned forward and studied the gauges, just as I’d taught him. Just then, there was a series of loud bangs, like a giant slamming a barrel with a sledgehammer, and chunks of red, blue, and yellow material popped up in the wake behind us.

It was, as they say, one of those pivotal moments in his six-year-old life.

Down below, an alarm bell began to ring. . .

RAISING CUBBY is coming. March 12. Be ready

RAISING CUBBY is coming!

noreply@blogger.com (John Elder Robison) — Thu, 31 Jan 2013 02:45:00 +0000

The bulldozer pointed straight down, into the wreckage of the house. Somehow, Cubby had gotten the machine moving, run it into the building, pushed the structure over, and then fallen fifteen feet into the wreckage of the basement. The only thing that stopped the big Cat was the fact that the tracks now spun helplessly, against the concrete foundation walls.

"Dad," Cubby shouted!! "Get me out of here!!"

Luckily, he'd been wearing the seat belt.

RAISING CUBBY. Parenting at its very best. Coming to a bookstore near you in FIVE MORE WEEKS. Be ready!!

On sale March 12, 2013

http://www.johnrobison.com/purchase-books.php

What Have We Done for the Autism Community?

noreply@blogger.com (John Elder Robison) — Sat, 26 Jan 2013 18:08:00 +0000

What have we done for our community? Angry parents direct that question at the IACC, the CDC, NIH and Autism Speaks every day. They say we’ve spent hundreds of millions in research, and talked about all our great accomplishments in research, yet the lives of the autistic people around them are not one bit better. How come?

I’m beginning my seventh year as an autism advocate – whatever that means – and one thing that’s clear is that the dissatisfaction expressed by members of our community is just getting louder. The inescapable conclusion is that the organizations that purport to be here to help are not delivering whatever it is we want or need.

I think the answer lies in the history of two organizations. Autism Speaks was chartered to use science to find a cure for autism; which the founders saw as a terrible disability. The IACC was formed under the Combating Autism Act of 2006, to advise CDC, NIH, and others. The very name CAA implies an epic battle against something very bad indeed.

With that background it should come as no surprise that both organizations began promoting research into the base causes of autistic disability. Progress was made – scientists identified numerous possible causative factors for serious autistic disability. But the identification of genetic errors (for example) does not quickly translate into a therapy for affected individuals. The result: we know more, but it doesn’t help the people living with autism today.

At the same time, other researchers developed new therapies; techniques that helped autistic people at all levels function better and live more independently. New technologies emerged that gave voice to people who were formerly largely mute, and they said some surprising things. As positive as those development were, though, they were limited to those few people who could afford the new therapies or who received them free as part of research programs.

The expansion of knowledge about autism led to an expansion of the way we define it. As we recognized traits of autism, we found those traits in a wider swath of population than anyone previously imagined. That led to an explosion of diagnoses and the perception that autism was a runaway epidemic; something that fed the fires of “cure” more and more.

While that was going on, possible environmental triggers for autism were discussed, and the possibility that we are unwittingly poisoning our children and ourselves raised its scary head. We certainly need to find out if this is the case, and take corrective steps as needed. But important as that is, it doesn’t help today’s autistic population.

For us, the discussion of how we got this way is a not-too-productive and often offensive sideline. We’re most concerned with making our best life with whatever cards we’ve been dealt. Our needs are many, varied, and disparate, but we’re pretty united in that we want help and understanding much more than we want to blame someone or some thing for “making us autistic.”

It all adds up to a situation where most of us are dissatisfied.

You might say we have a few big problems. First, we have made less progress than people want in developing tools to meaningfully remediate disability. Second, the tools we have developed remain largely unobtainable because they are costly, and not covered by most health insurance plans. Increased awareness has made a third problem painfully obvious in recent years: Our education, legal, and other social systems have not evolved in lockstep with our knowledge of autism. Consequently, we fail in school, have trouble with the law, and fail socially and in the workplace far more than ordinary people, and there’s precious little being done about it.

As you might imagine, that leads to frustration on the part of families living with autistic disability. After six years of this, we have an autism community that is very unhappy on many fronts.

I suggest it’s time for a change, and I offer this as a constructive suggestion for IACC, NIH, CDC, and Autism Speaks.

I believe in the basic research we have funded over the past few years. I have been privileged to review and vote for much of the work that is funded today, and I am very confident that it will lead us to new and ultimately beneficial discoveries. At the same time, I recognize this is a very long-term game, and the biggest benefits may not arrive for a decade or more.

In the past few years I have seen an increasing recognition of this reality, and I’m happy to see that we are funding more research into behavioral therapies of all sorts to help today’s autistic population enjoy their maximum potential for success and quality of life as we are right now. In other words, we are beginning to embrace the notion of “helping us be the best we can, the way we are.” That is vitally important because it is the most effective thing we can do for our population now.

I think that work should continue, but I believe we should direct a significant fraction of tomorrow’s uncommitted research funds in a different direction. I believe we should be funding more studies to evaluate the effectiveness of tools that have already been developed, and I think we should fund more research aimed at building a solid base of evidence for what emerges as the most effective extant therapies.

I also think we should conduct more studies to evaluate some of the unconventional therapies being marketed to parents today. Skeptics are often dismissive of alternative diets, vitamin or hyperbaric therapies (to name just three) but the fact is, many parents employ those techniques, and I believe we have a duty to ascertain their efficacy and safety for the sake of the kids.

Finally, I believe Autism Speaks and other groups that can lobby (NIH and CDC can’t do that) should shift more of their resources from basic research to funding and using these studies to push state and Federal health care legislation that will put more of these therapies under the umbrella of general health insurance.

I hope we can fund Autism Speaks and other lobbying groups to address the broader social challenges of autism: acceptance and adequate supports in our schools; bullying and discrimination; enhanced understanding in the legal system; and understanding and developing ways to help us find parity in job and social success.

That, I believe, is the best way to deliver meaningful benefits to our real constituency – the people living with autism today.

I’d like to close with some facts, and a call for action:

1 – We have developed a number of promising therapies – some medical, some behavioral, some environmental – that seem to offer meaningful help to certain autistic people.

2 – We see the promise of new technologies like tablet computing/apps but we’ve left most development in the hands of private companies, which leaves the resultant products unaffordable as things stand today.

3 – History shows that some of the greatest discoveries come from basic research and I believe we must continue in that direction. At the same time, we can’t overlook the needs of people today.

4 – The reason most new therapies are not covered by insurance is that there is not a strong body of evidence that they work, nor are there standards for how they will be delivered. Consequently, insurers wriggle off the hook saying they don’t know what they’re paying for, or if it will work. That’s why there’s such a critical need to fund studies that build evidence, and develop standards for delivery.

5 – Changing the way our education, legal, and social systems accept, engage, and help autistic people is going to be a massive and expensive effort; one that is just now beginning. It’s even more critical as we begin to understand the true size of the autism community (including the large numbers of previously undiagnosed or misdiagnosed adults.)

This suggestion represents a significant shift of direction from our current policies. I hope we can begin making this or a similar change, because the current program isn’t yielding the results our community wants or needs.

John Elder Robison

John Elder Robison is a member of the IACC, a member of the science board of Autism Speaks, and he’s served on boards and committees for both CDC and NIH. The views expressed in this article are strictly his own.

Can We Outgrow Autism?

noreply@blogger.com (John Elder Robison) — Thu, 17 Jan 2013 20:26:00 +0000

Earlier this week news reports presented a study describing children who supposedly “grew out of autism.” There’s been a lot of talk about what really happens, and whether people can “grow out” of being autistic as they get older. The authors of the story call that an “optimal outcome.”

I’ve written this essay in response to the many queries I got, asking for my take on that news. Well, here it is . . .

In my book BE DIFFERENT I describe the process by which we can learn how to compensate for ways autism disables us, and by doing so, emerge in part or in whole from disability.

Psychologists say we learn adaptive strategies, and some of them work very well indeed for those of us with the cognitive resources to make full use of them. I’ve certainly seen how they helped in my own life. I was disabled as a child, but no one would call me disabled today. I’m independent and function, as are many autistic people.

But that’s the thing . . . I’m still autistic. What about the kids in the study?

They ranged in age from teens to twenty-one. All were screened for autism using the gold-standard ADOS tool, and their scores were deemed below the threshold. Yet they too had been disabled as children, and all had received formal autism diagnoses before age five. There were thirty-four of them in the study.

What the study found is that those kids – as they grew up – improved so much in functionality that they no longer qualified for an ASD diagnosis even though they were well above threshold as kids.

The study does not really say “they grew out of being autistic;” rather it says they no longer have diagnosable symptoms. In fact the authors make this same point, saying the people may still have symptoms that escaped detection or were sub-clinical.

We don’t yet have a brain imaging test for autism, so we can’t look in their brains and say how they might have changed. It’s all speculation, but I’ll bet they didn’t change much. I don’t believe you outgrow autistic brain differences.

Yet I do believe we can outgrow autistic disability. The degree to which we succeed varies but most of us get better as we age. In addition, recent studies suggest that our brains may develop in a more typical direction much later in life – even in middle age – and that may help older people like me.

Furthermore, I think this study gives real and legitimate hope to any family raising a kid with autism because it highlights the great improvements that are possible for some of us. If you have a five year old with autism, I’d think that would be very comforting to read.

At the same time, we should be careful not to read too much into this. As the authors say, the kids who emerged most fully were relatively mildly affected to begin with, and they started out with good IQ scores. Kids who start out more disabled may progress just as far, but their different starting point might still leave them with significant disability as adults.

I’ll offer another point of perspective. All the same tools used for the kids in this study have been used on me. I’ve been tested repeatedly with the most recent round being last August. In that ADOS screening, I was still above the ASD diagnostic threshold. In the facial recognition tests, I was also well above threshold. In the social function, I was above threshold.

The thirty-four kids in the study therefore tested less disabled than me, and I am not really disabled in daily life. But my differences still show up on the tests. What does that suggest? Some of us do an excellent job of masking disability, especially in middle age.

Hopeful as that sounds - be cautioned! Any of us can suffer setbacks at any time. Successful as I seem, life circumstances could change for me in an instant, and I too could find myself crippled by the same autism that makes me seem exceptional today. The past does not always predict the future, and even though I say we generally get better, there can still be setbacks.

The takeaway from that: Any of us may need supports at any time of life. Even people like me - seemingly independent and successful.

Another takeaway: If my life is a guide, it suggests smart people will fool the testers, while remaining autistic. Using myself as an example, no reasonable psychologist would suggest I should be evaluated for autism if I appeared in his office for depression, marriage counseling, whatever. Yet when I participate in autism studies and am screened by blind evaluators, I come up on the spectrum every time.

And more importantly - when I am tested in some of these cutting edge studies that look for patterns of autism in brain imaging, plasticity, or other "hard" parameters . . . I am in the same autistic group. So my adaptation gets visibly better while the internal differences seem to remain the same.

In my case all the science says I am autistic as always, but it shows less and less the older and wiser I get. My guess is the kids in this study were more mildly affected than me and are examples of the same thing. I have no way to be certain, of course, but that's my suspicion. That's in no way a criticism of the study; just an opinion from a middle aged autistic with some experience of the science.

In the final analysis, I choose to stand by my own phrase: many of us emerge from disability as we get older. Whether we emerge in whole, in part, or whether we go back and forth depends on many things including life circumstances and where we ourselves start out. I've said that for years. While the phrase popularized by this study - outgrowing autism - sounds hopeful, I do not in my heart believe it's real. Looking like everyone else is not the same as outgrowing autism - even when tests don't show disability at that moment.

So what’s the conclusion? Take hope, I say, because I’ve always said we get better with age, and this study affirms it even if I do take issue with its catchphrase. Also take hope because the kids in this study all test BETTER that me, in terms of not having traits of disability, and I’ve done pretty well. At the same time, try to be realistic in your thinking. This study highlights some individuals who adapted remarkably well. Not everyone will succeed to that degree. Be happy with what you are, they are, and we are, knowing life is a never ending process of change and growth and we autistic people are part of it just as you are.

John Elder Robison

PS - - -my newest book - RAISING CUBBY - is coming March 12. Order your copy here

Interagency Autism Coordinating Committee meets on Jan 29

noreply@blogger.com (John Elder Robison) — Wed, 16 Jan 2013 16:14:00 +0000

I'll be there . . . please join be either live or online, and feel write to write in here with any questions or comments:

Please join us for an IACC Full Committee meeting that will take place on Tuesday, January 29, 2013 from 10: 00 a.m. to 5:00 p.m. ET at the William H. Natcher Conference Center, 45 Center Drive, Bethesda, MD. Onsite registration will begin at 9:00a.m.

Agenda: The committee will discuss updates on ASD research and services activities and plans for the update of the IACC Strategic Plan for ASD Research.

Meeting location:
National Institutes of Health

William H. Natcher Conference Center

45 Center Drive, Conference Rooms E1/E2 - Map and Directions

Bethesda, MD

Nearest Metro stop:

Medical Center Metro – Red Line

The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered.

Remote Access:

The meeting will be remotely accessible by videocast (http://videocast.nih.gov/) and conference call. Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

Conference Call Access
USA/Canada Phone Number: 888-603-9709
Access code: 7857464

Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed above at least five days prior to the meeting. The webcast has closed captioning available. If you experience any technical problems with the webcast or conference call, please e-mail iacchelpdesk2012@gmail.com or call the IACC Technical Support Help Line at 301-339-3840.

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda, materials and information about prior IACC events.

Contact Person for this meeting is:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 6182A
Rockville, MD 20852
Phone: 301-443-6040
E-mail: IACCpublicinquiries@mail.nih.gov

The Leica, and rangefinder photography in today's world

noreply@blogger.com (John Elder Robison) — Mon, 14 Jan 2013 02:30:00 +0000

When people see my little Leica camera they sometimes ask why I still use it, with all the automated alternatives today. Why don’t I use a “real” camera, like a Nikon? In fact, I have several Nikon professional SLRs, and I’ve got some pocket point and shoot cameras as well. Each are “real” cameras, and each one has its place.

Interestingly, when people look at the images rendered by the Leica, no one questions my selection of photographic tool. My Leica images are sharp, with good three-dimensional feel and very smooth rendering of the out-of-focus areas. Color is good, and the images are free of distortion and artifacts.

But of course the same can be said for images from my Nikon D3S or a comparable Canon pro SLR. What makes Leica images different? That’s a question I’ve been pondering all week. . .

Many people have written about the look, feel and quality of Leica cameras and lenses. There's no denying they are beautifully made, top quality products. The fact that there is an active market trading Leica items from the 1950s, 60's and 70's is testament to their longevity, and collectibility. That, however, is something for others to write about. I'm interested in image making ability, and final image quality.

There was a time when lens design set Leica apart from other compact camera makers. Leica images were sharper, more defined, and in myriad other ways set the standard for compact camera/lens performance. That’s not so true today. Comparison images shot with identical settings using Leica and Nikon/Canon’s best lenses are indistinguishable to me.

Today, what sets the images apart is the way in which the camera systems are used. The Leica, lacking automation, is used in a slow, deliberate way. Pro SLRs, in contrast, are often used as high performance point and shoot action cameras, where the photographer composes images quickly and often under adverse conditions, and relies on the automation in the camera to return a good exposure.

Most of the time, the automation works, and it’s reshaped the face of documentary photography. Fast focus tracking has made it possible to shoot close ups of batters hitting balls and the expressions on the faces of race car drivers going 200 miles an hour. The ability to switch ISO from shot to shot makes it possible to walk from bright sun into a dim room and never miss a frame.

Powerful lenses have allowed photographers to zoom into a scene, isolating it from the surrounding background and increasing the impact of the imagery. Extremely sensitive sensors make it possible to take available light snapshots in near-darkness; something we simply didn’t do before.

Yet we pay a price for using that automation. When we stand behind the lens, tracking a fast-moving basketball or a bird in flight we lose our sense of the wider world. Our reality becomes that one tiny speck we see in the viewfinder, and our images are shaped accordingly.

The rangefinder camera – and this is best exemplified in the Leica – calls for a totally different approach. There are no powerful zoom lenses. Most rangefinder lenses have an ordinary or wide field of view. In addition, the viewfinder shows the whole scene, extending well beyond the limits of what the lens will capture.

That difference requires the photographer to see and understand the whole scene, rather than the tiny bit he’d see through a 200mm zoom. With that perspective, his compositions will inevitably be different. In some cases, they will be more realistic and natural to viewers as the perspective of the picture is closer to the perspective one would have had, seeing it in real life.

The focus system makes for another compositional difference. Without autofocus, we must focus and frame every shot in a slow, deliberate manner. That forces us to think about each image, and when we do, we again tend to make different decisions.

When photographing action with a rangefinder, the lens must be set to a certain distance, and the photographer waits for a composition to come together. When it does, he presses the button, and gets the shot. One shot. In that same period, an SLR shooter might have captured fifty images but their feel would be distinctly different. Here’s an example.

The SLR images focus on a single player, and a moment:

The Leica image captures a larger context, and a sense of place. You can see it's a college gymnasium, and you can sense the crowd. None of that is present in the closeup, powerful as it may be in its own way.

As I said, each has its place. I create both kinds of images, depending on my mood and goals.

Without a sophisticated light meter (which can still be wrong) we must manually evaluate every exposure setting. Each picture becomes the result of deliberation and care. The image below is a good example:

The high performance SLR excels at capturing the moment, under any conditions. The rangefinder encourages careful, deliberate picture taking.

When we photograph people, our subjects often sense this deliberation. They respond favorably to the slow pace of rangefinder photography; often feeling and acting more naturally.

The smaller size of a rangefinder also facilitates more natural picture taking. People aren’t as likely to feel intimidated by the smaller camera. There are streets you would not walk on with a big SLR, where a nondescript rangefinder goes unnoticed and unremarked.

There are also places I won’t go with a full size SLR simply because it’s big and heavy. My Leica can accompany me to those places, because it’s small, light, and fits in a coat pocket. Remember - the best camera is the one you have when you need it. If you’re on foot all day it’s a lot more comfortable to carry a Leica than a Nikon D4.

Weight and bulk excepted, some might say you could do the same things by using an SLR in manual mode. And indeed you could, for the most part. But people don't do that. When they buy a camera with automation, they use it. People do not buy automatic transmission cars to shift them manually, and cameras are the same.

With an SLR, one must take special steps to use it as a manual camera, where with a rangefinder it's the only way to shoot. The simpler tool forces the photographer to think, in ways a modern SLR does not. If you're shooting news, you probably don't want that as much as speed, performance, and reliability. But if you're shooting fine art . . . . that is the place of the Leica today.

By taking away the automation yet retaining such extraordinarily good image making capabilities the Leica forces you to become a better photographer. When your Leica images are less than tack sharp, overexposed, or clipped at one end of the other . . . there is no machine to blame. Just you. If you master a Leica you will take better photos with any camera. I guarantee it.

If I were looking to walk out into the desert, or to the top of a mountain, and photograph the landscape, there is no better camera I could carry than an M8, M9, or MP. If I wanted to capture birds or wildlife I'd make a different choice but for the scenery itself the Leica cannot be beat.

I also use the Leica to create action images (like the basketball shot above) that have a more classic, period feel to them. It's hard to put in words, but that b&w Leica shot certainly stands apart from any other photos of that particular game. In a world where so much looks the same, there's a lot to be said for that.

A farmhouse in the snow

John Sebastian of the Lovin Spoonful sings "Do You Believe In Magic?"

Radio City by night.

And remember - it's not a camera or a picture - but my third book Raising Cubby is coming, March 12, 2013. Be ready.

John Elder Robison
January, 2013

Aspergers and Violence - Let’s Stop the Rush To Judgment

noreply@blogger.com (John Elder Robison) — Thu, 20 Dec 2012 12:14:00 +0000

Asperger’s, Autism, and Violence or Mass Murder

Let’s Stop the Rush To Judgment

Whenever something horrible happens the public and the media look for answers . . . factoids to explain what may be truly inexplicable. Whatever information can be discovered is tossed out into public view in the hope that somehow a bunch of discrete facts and data points will somehow provide the answers everyone is seeking.

This happens whether the event is a catastrophic fire, a plane crash, or a mass killing. Thanks to the Internet, people all over the world speculate about what happened and why, often in the absence of any firsthand information. The result: a rush to judgment, and all too often - innocent people harmed.

Sometimes these early speculations are prescient. When reporters observed an aviation mishap and said, “the same thing happened on another flight a few years ago,” that report led to the discovery of a flaw in an aircraft’s design, and the potential saving of many lives when a design defect was corrected.

Unfortunately, on other occasions, early speculation proves unfounded, wrong, or irrelevant. When that happens, innocent people are often harmed by the rush to judgment. I’m very concerned that is occurring right now, as the public digests news reports about the Sandy Hook school murders.

Reporters are saying the killer had Asperger’s Syndrome, a form of autism. Every time a news story does that – by tying “killer” and “Asperger’s” in the same sentence – they are at some level implying that there is a connection between autism and mass murder.

There’s not.

Statisticians have a phrase for this situation: Correlation does not imply causation.

Let me explain that by way of an example. Three banks are robbed, in three different cities. Each bank had security cameras trained on the entrances. In each case, a review of the tapes showed a white Toyota Camry turning into the parking lot, moments before the robbery.

Was that a clue? Was the same car used to rob all three banks? No. It was a random, irrelevant coincidence. In fact, white Camrys are one of the most common cars in the country and we might observe them at the scene of most anything, without any causative connection at all.

How about this factoid: Most school shooters are Caucasian males. You might find that statement a little more shocking than the previous one. But it’s true. Does that mean every white male Caucasian who enters a school is a potential mass murderer? Of course not.

Suggesting a mass murderer had Asperger’s is much the same – it may be true, but stating the fact does nothing to explain the crime, nor does it help prevent other crimes in the future. What it does do – and this is important – is paint a whole swath of population – Asperger people – with a brush that says “potential mass murderer.”

That, folks, is a problem, because the average person does not know enough about Asperger’s to know it does not turn people into mass murderers. They file that factoid away until the next time they see someone with Asperger’s. Then, instead of giving him a fair shake, they treat him as a potential killer. Everyone loses. As an adult with Asperger’s, who’s seen enough discrimination already, I’m not too happy about that.

What can we do? There’s no way to “undo” a news story.

Going forward, perhaps the best thing we can do is explore the question: Can Asperger’s turn a person into a mass murderer? The simple answer is no. Here are the reasons why:

Asperger’s is an autism spectrum disorder. People with Asperger’s typically have difficulty reading the unspoken cues of other people. You might say we are oblivious to the language of emotion.

Yet we are emotional people. Many studies have shown folks with autism have very powerful emotions; the problem is, we often can’t express those feelings in ways others can recognize. Sometimes our responses seem inappropriate (we may smile when you expect us to look sad.) Other times, an event that triggers a strong emotional response in one person has no visible effect on a person with autism.

Lay people often take those signals to mean we Asperger people don’t have feelings, or we don’t care about them, or that we lack empathy. Nothing could be farther from the truth.

As the definition of autism and Asperger’s says: This is a communication disorder. It’s not a “lack of feeling” disorder. In fact, most clinicians who work with people on the autism spectrum will tell you autistic people tend to care deeply for people in their lives, and have a sweetness; a childlike gentleness – something totally at odds with what you’d expect in a cold blooded killer.

There is nothing in the definition of Asperger’s or autism that would make a person think we are a violent group. That’s reinforced by criminal justice studies telling us that people with autism are much less likely to commit violent crimes than the average person. Indeed, those studies show autistic people are far more likely to be victims of violence than perpetrators.

If you’re looking for a group of people to fear, we’re not it.

So where does that leave us, in our quest to understand these most recent killings?

Adam Lanza may well have had Asperger’s. But that did not make him a killer. Some other factor was at work. Just as getting a cold doesn’t protect you from catching measles, having an Asperger diagnosis does not mean you don’t have a host of other issues as well. One can suffer from homicidal rages, and also be diagnosed with Asperger’s. Those conditions are not mutually exclusive.

It's also worth noting the studies that have shown how *anyone* may become violent, given the "right" (wrong) set of circumstances. It's true that people on the autism spectrum have less propensity for violence than the average person, but that does not mean they can't ever become violent. If violence is a disease, no human is immune.

And that’s not the only possibility. There are plenty of other frightening and disagreeable combinations in the world of psychiatry.

In fact, a child who grows up with a disability that leads to bullying (like Asperger’s) may develop violent feelings toward his tormenters. Most times, those feelings stay inside, to the detriment of the victim. Sometimes, though, the victims strike back. When that happens I’d say it was the bullying, and not the disability, which turned that person violent.

One day we may have a hard medical test for autism – including Asperger’s. Until then, it’s diagnosed by observation – a process that is unfortunately more prone to error than we would like. The Asperger diagnosis attributed to Adam might even have been a mistake; sociopathy can masquerade as mild autism or Asperger’s.

It’s easy to see how the two conditions might be confused. After all, one is characterized by a weak ability to show feelings, while the other is founded on an absence of feeling within, and a lack of innate moral foundation. Those two conditions may look very similar, but the outcomes are not. One leads to anxiety, depression, and social failure. The other may lead to evil, and a much darker place.

I’m not Adam’s therapist, and I have no knowledge of his case, but I would not be surprised if there was quite a bit more to his story. Much of it may never be known.

I wish I had some simple solutions to propose, so that we might prevent these horrific crimes in the future. Unfortunately, I don’t. A reading of history shows us that most rampage killers turned deadly with little or no warning. Many had no prior history of serious violence and some had no criminal records at all.

Yet there are things we can do. We can take stronger steps to address bullying, and we can offer counsel to those adults in greatest need. Many studies have shown that violence is a last resort for people at the end of their rope. We have the power to give those people a lifeline, so they won’t turn to the gun.

To me, this crime and others like it show the great need for mental health reform. We have no facility in this country for “mental health checkups,” and we’ve pitifully few lifelines to help those on that slippery slope to suicide or murder, whatever the cause. If I were to express a Christmas wish here, it would be that our politicians see that failing, and act.

Best wishes for the holiday season,

John Elder Robison

And remember - RAISING CUBBY is coming - March 12, 2013

Autism - The Invisible Cord: A Siblings Diary

noreply@blogger.com (John Elder Robison) — Thu, 06 Dec 2012 02:16:00 +0000

Last week, I wrote an essay challenging Time Magazine’s choice of a title for its story on siblings of kids with autism. I believed calling the siblings “autism’s invisible victims” was inappropriate and offensive.

The disgust I felt over the title choice overshadowed the article itself, which made many good points if one could get past the demonization and victimization.

The author of the story – a psychologist named Barbara Cain – had previously written a book called Autism – The Invisible Cord: A Sibling’sDiary. I decided to download her book and see how she described life as an autism sibling. I wondered what I would find.

I read the book in an hour, and all I can say is, what a delight! It’s a sweet and gentle account of Jenny and her life with Ezra, her autistic brother. There’s not a trace of victimization in the book and indeed I recommend it highly to anyone who has a sibling living with autism in their life.

Barbara’s story – told in the form of short diary entries – really shows what is feels like to grow up with a brother who’s different – the joy, the hurt, the desire to protect him and the hope he will grow up and make a life on his own.

Reading her words, I thought of my own childhood, and that of my son, who also has autism. If we’d had sisters, would they have been like the Jen of the book? I hope so.

Kudos to Barbara for a wonderful story that any sibling or family could treasure.

You can order her book here and find her @BarbaraSCain on Twitter

Are Siblings Really "Invisible Victims of Autism?"

noreply@blogger.com (John Elder Robison) — Sun, 02 Dec 2012 16:58:00 +0000

What is a victim?

The word may be defined as: a living thing that is adversely affected by the action of something else. What does that make the “something else?” The victimizer.

Here are some appropriate examples that will be familiar to all of you:

Bob was the victim of a sophisticated swindle

The victim, thirty-year-old Jessica Danes, was shot twice at close range

Don’t become another burglary victim. Buy an Acme Alarm today!

In every case the victimizer is someone undesirable. A swindler, a murderer, or a burglar. Indeed, the word victimizer has no positive connotation in our society. It is not a label anyone any reasonable person would want to wear.

With that preamble, here comes a headline from Time

Autism’s invisiblevictims – the siblings.

I was shocked to see such a phrase from a supposedly progressive mainstream publication.

Left unsaid – but obvious – is the identity of the victimizer. It is us! We autistic people are victimizing our poor siblings. With everything else we’ve done wrong growing up, victimization of our brothers and sisters is added to our burden, thanks to this article. At least, that’s how author Barbara Cain seems to see it.

It troubles me greatly when mental health professionals make pronouncements like this, as if we autistic people are oblivious to what they say or do. Siblings are not “victims of autism.” They are siblings of autistic people. Period. Some things about family life are easy. Other aspects are hard. Autism is one of those things.

Does autism make life tough for us and our siblings? Sure it does, sometimes. Does autism show us a fun and funny side on other occasions? Sure, it does that too. Some of us revel in our eccentricity while others would give anything to be rid of this autism thing. All the while we have one thing in common – we are not victims or victimizers. We are just autistic people. Our siblings aren’t victims either. They are our brothers and sisters, sharing in life’s joys and struggles.

Autism is a permanent state of being. It’s how we’ve been as long as we can remember, and how we will be – for the foreseeable future. We will change, grow and develop, but we will always be autistic. Victimhood – in comparison – is a temporary state. We may become victims at any time – of a robbery, a building collapse, or an Internet scammer. But those things will pass. They do not define who we are in the way an essential difference like autism does.

Some may defend this article by saying autism affects everyone in a family negatively, like poverty or a hurricane might. That’s a flawed defense, though, because hurricanes or poverty are faceless victimizers. Anyone can blame them, but its meaningless because they are no one. We autistics, on the other hand, are people. Real people. Your brothers and sisters. With that fact in mind I repeat – we are not victimizers.

Many in our community have argued against the demonization of autism and autistic people. It’s distressing to see the same tired phrases repeated in a national forum like Time. I’m sure the writer had good intentions, but the implementation leaves much to be desired.

Does that mean we should ignore the pain of autism siblings? Of course not. Those of you who follow my writing and my service on the IACC and autism science boards know that I have a strong commitment to develop ways to relieve suffering and disability caused by autism. It’s natural to think these therapies, tools, or treatments would be aimed at the autistic people themselves but in fact we must help everyone in the “autism circle.” That certainly includes the parents, and yes, the siblings.

We must also change our world to be more accepting and accommodating of autistic people. That will reduce suffering for all of us.

Meanwhile, let’s keep the word “victim” out of the autism conversation.

Best wishes to all of you this holiday season.

John Elder Robison

KIRKUS REVIEWS on RAISING CUBBY

noreply@blogger.com (John Elder Robison) — Tue, 13 Nov 2012 10:45:00 +0000

KIRKUS REVIEWS weighs in on RAISING CUBBY:

A father reflects on the “tumultuous father-son journey” that he and his son have shared.

In this alternately funny and moving memoir, a follow-up to his 2007 best-seller, Look Me in the Eye, Rob

ison (Be Different: My Adventure's with Asperger's and My Advice for Fellow Aspergian's, Teachers and Misfits, Families and Teachers, 2012, etc.) discusses how he dealt with the joys and challenges of fatherhood. As he relates, these were exacerbated by his own social inadequacies and those of his son, both of whom are Aspergian and suffer from “blindness to the nonverbal signals of others.” The author reveals his thought processes as he struggled to share his painfully arrived-at social insights with his son in order to help him navigate a fulfilling life. Though his early life was rocky, Robison became a successful electrical engineer. Although he had not completed high school, he worked on sound and lighting effects for Kiss and other top rock bands of the 1970s. Later, he designed computer games before opening his own business restoring and servicing high-end European cars. When his son was born in 1990, fatherhood proved to be more of a challenge. Beginning with his efforts to understand why his baby was crying, he describes the trial-and-error problem-solving approach that he used to compensate for his inability to intuit social signals. In 2007, his 17-year-old son, who had a basement chemistry lab, was arrested for “possessing explosives with intent to harm people or property.” Although he was ultimately exonerated, Robison believes that targeting his son was an example of political grandstanding by the prosecution and a failure of the justice system.

A warmhearted, appealing account by a masterful storyteller.

http://www.johnrobison.com/

In bookstores everywhere March 12

Guest blog - Asperger's and Sibling Rivalry

noreply@blogger.com (John Elder Robison) — Sat, 03 Nov 2012 12:36:00 +0000

Today's blog is a guest post from another writer, Trish Thorpe:

My name is Trish Thorpe. I am a 53-year-old woman with an older brother (by two years) who has Aspergers Syndrome. He wasn't diagnosed until a couple of years ago. Once he was diagnosed, I understood, finally, the role that my parents played in the years of misunderstood isolation that he has endured, along with my own misunderstood self-blame. The text below attempts to shed some light on the importance of educated parenting, Aspergers, and sibling rivalry.

This post is directed to all the parents out there who struggle daily to maintain peace at home between their Aspergers Syndrome (AS) children and their neurotypical children. My goal here is to provide a comparison between today’s awareness of Aspergers and sibling rivalry and my own unfortunate past predicament. I also hope to illuminate the importance of appropriate parenting in Aspergers families.

Thankfully, there is a lot of very insightful information available today about how to recognize and deal effectively with Aspergers and sibling rivalry—something that was desperately lacking while I was growing up.

After reading through several online resources, I can conclude that the non-AS (or neurotypical) child who has an AS sibling needs extra help with:

· Dealing with peer and community reactions

· Understanding their sibling’s limitations

· Having their expectations clarified

· Having their feelings validated

The way that each parent provides for their own children’s needs of course varies greatly. And needless to say, not every strategy works in every situation. But the fact that you as a parent are aware of the situation and are attempting to do right your kids, in my mind, goes a long way.

Many of the online comments I’ve read are from frustrated parents who have learned, tried, and failed using various techniques to improve their family’s well-being. To them I say that it may not seem like it at the time, as your children continue to bicker vehemently or display violent meltdowns even after you’ve exhausted every strategy you’ve learned to intervene appropriately, but believe me, your efforts count.

My own story is different from any of the scenarios that I’ve read so far. One of my parents (my Dad) actually initiated and perpetuated the sibling rivalry between me and my AS older brother. He was constantly calling attention to the differences in our abilities and playing us against each other. And even though Aspergers was not a recognized diagnosis while I was growing up (1960s and 1970s), understanding and acknowledging that there was indeed a problem seems like it should have been the appropriate parental response.

There are three siblings in my family and I’m in the middle. I have an older brother by two years who has Aspergers Syndrome and a neurotypical younger sister who is younger than my brother and me by five years. I was the athlete of the family (good at everything I tried, including schoolwork, and making friends) and my older brother was the tinkerer (“a machine aficionado” in John Robison’s words) and loner. Our Dad was horribly self-absorbed. Here are some telling images:

Here are a few paragraphs that describe a typical event from my past. To set the scene, my family and I were staying at a hotel in Southern California and my brother (Spencer), Dad, and I (“Fisheye” is my nickname) were playing shuffleboard. With his typically wretched disdain for my brother’s lack of athletic abilities, Dad blasted him verbally and used me as his benchmark:

Dad let Spencer push his shuffleboard disc first. Spencer pushed his disc way beyond the tip of the triangle, so his score was zero. I got to go next. I aimed my disc carefully toward the top section of the triangle.

“Good score, Fisheye! You got twenty points on that one!”

Dad’s turn. His disc slid perfectly and stopped right in the middle of the top section of the triangle.

Spencer went next. Again he pushed his disc way too hard past the tip of the triangle. Dad’s twitch was going really fast now. He stood still and glared at Spencer.

In a harsh voice, he said, “Spencer, you’re a pig! You’re not even trying! If you focused on the game and not the snack bar for once, you might be as good as your sister!”

I tried to detect humor in Dad’s eyes. Maybe he was joking. But the rest of his face looked serious and his tic was activated, so I guessed he wasn’t kidding. I immediately put my head down, hoping no one else heard Dad’s words. I must have done something terribly wrong for him to say such mean words to Spencer. The three of us silently put our shuffleboard poles back in the game shed.

You’ll notice from the excerpt above that the non-AS sibling has a tendency to automatically assign self-blame for her brother’s lack of athleticism (self-blame seems to be a recurring theme for neurotypical siblings). Needless to say, when one of the parents fuels (or initiates) the fire, a bad situation can only get worse.

My book (“Fisheye”) chronicles the long-lasting effects of bad parenting on Asperger siblings. Writing through some of the memories of worrying about my brother and blaming myself for his situation helped me a lot. I hadn’t realized what an enormous impact my Dad’s (cruel and uneducated) campaign to pit my brother and me against each other had. I realize now how my past feelings have affected everything I’ve done during the past 35 years of my life and how it affects my actions today, even though I’m much more aware of it.

So to the parents out there who are trying so desperately to be educated and sensitive to the needs of both their AS and non-AS children, keep on! Take comfort in knowing that your efforts might feel futile, but the fact that you’re clued-in counts for a lot.

- Trish Thorpe
“Fisheye: A Memoir” http://www.amazon.com/Fisheye-A-Memoir-Trish-Thorpe/dp/0985328800

Bibliography:

New York Magazine and the autism spectrum

noreply@blogger.com (John Elder Robison) — Wed, 31 Oct 2012 12:49:00 +0000

New York Magazine takes on Asperger's and the autism spectrum. Enlightening? Offensive? A not-too-surprising view of how the rest of the world sees "us?" Let me know what you think . . .

http://nymag.com/news/features/autism-spectrum-2012-11/

A Modest Proposal for Autistic Employment

noreply@blogger.com (John Elder Robison) — Sat, 13 Oct 2012 15:23:00 +0000

One of the toughest issues for adults with autism is chronic unemployment. A fortunate few of us are able to work independently without supports or subsidies, but a terribly high percentage remain unemployed or underemployed, year after year.

All too often I hear of autistic geniuses – people with IQs of 150 or even higher – bagging groceries or sweeping floors because they could not navigate the social minefields of school and work. It’s only by the grace of god that I am not one of those people. Smart as folks say I am, I failed miserably in the social environment of every job I had. That’s despite my technical competence.

I see some of those same problems with other autistic adults who can’t get jobs at all, or get fired from every job they get, until they end up on social security disability, frustrated and cut off from the working world. The same thing would have happened to me, if I had not had the good fortune to start a small business that succeeded.

It’s the lucky few of us who remain productively employed. Many of us stay that way by the slimmest of margins. Some of us succeed by finding tolerant or accommodating employers, and work we can do. Others (like me) forsake traditional jobs to work for ourselves. If we can meet the market’s demands, we prosper despite our eccentricities or even better - because of them.

The problem is, most disabled people aren’t very successful at employment, despite their best intentions, training, and unique skills. In the autism community chronic unemployment and underemployment are one of our biggest challenges. We talk about all manner of solutions, but ultimately, it comes down to this:

If we cannot do a given job as well – and as cost effectively - as someone who doesn’t have a disability, we are not going to get hired. Actually, the bar is really higher. As outsiders in the world of employment we need to be both better and cheaper to earn a place in the workforce. Being equal is only good enough once you’re inside.

We’ve tried solving the employment problem several ways in America, with limited success. One way or another, we run afoul of labor laws and regulations. For example, other countries allow the creation of companies who employ autistic people (as an example) to do software testing. In the United States that would be discriminatory, and they’d have to allow anyone to apply for those jobs, autistic or not.

Other countries allow companies to pay disabled people less than the minimum wage, or less than the market rate for a given task. In the US, labor activists attack those sorts of programs as exploitive. They paint the employers as villains who are taking advantage of a disabled population.

The result: Unemployment remains distressingly high among our disabled and different population. Yet we remain eager to contribute, and willing to work if only there is a place where we are wanted, needed, respected, and able to earn a fair wage doing meaningful work. Something needs to be done.

I’d like to advance a modest proposal for how we might solve the employment problem, by giving people with disabilities special employment status, and awarding tax credits on a sliding scale to companies who hire us.

I call this Workforce Disability Credit, or WDC.

What if we allowed people to apply for WDC instead of or in addition to social security disability? When applying, a person would pass a similar functional evaluation, but instead of being awarded a support check, that person would get a rating that he’d take to employers.

He might get a standard disability check until he found work under WDC, at which time his disability check would taper off or vanish to be replaced by a larger check from the employer.

No one would be forced to join WDC, but those who wanted to participate would have a subsidized path out of disability; something we cannot offer people today. It wouldn’t work for everyone, but if it worked for some, it would be very worthwhile.

The person’s WDC rating would tell employers what sort of tax credit they’d get for hiring him (or her), to offset the added burden their disability might place on the company. For example, a mildly disabled person might have a 30% rating, meaning the company would get a 30% credit for hiring him.

If they took a job that paid a nominal $20 per hour, the employer could pay the disabled person the $20 hourly wage and get 30% back as a tax credit. Hiring a person with a 60% rating would get them 60% credit. The worker would earn a market rate wage, and the employer would get a discount to make someone who might otherwise be less productive or more costly attractive.

If we tied that program to a tax credit program for creating jobs in America instead of exporting them to lower-wage nations, the effect would be even greater.

In one stroke, such a system would make mildly disabled people more attractive to employers and it would encourage them to seek work with the goal of eventually getting off disability entirely.

A system like this would accomplish several important things:

1 – It would bring jobs that have been outsourced overseas back to America when disabled people can do them effectively and efficiently, and American companies could take advantage of the tax credit to lower their costs.

2 – It would be tremendously beneficial to the self-esteem and well being of participants, by getting them off disability and into the productive workforce.

3 – It would be a far better use of government dollars. Money paid out in disability support does nothing for the economy. Money paid out in employment subsidy builds the economy by building business.

4 – It would create incentives for American businesses to find ways to employ our more disabled population in productive occupations. Today most of those people are unemployed with no real chance of sustained employment.

Some will say we have systems like this already, such as the existing tax credits to hire disabled veterans, and various state programs to hire people on support. However, I propose two important differences:

1 – Give employers the tax credit right away, by deducting it from the weekly payroll tax deposit. The present system, where an employer gets a tax credit the following April 15 when he files a return simply does not incentivize small businesses where cash is tight. Furthermore, tying the tax credit to income tax effectively restricts the credit to businesses that make good profits – something that’s kind of rare among small business today.

2 – Make the credit something the employees apply for, so they can use it as an arrow in their quivers in the application process. All too often, the credits we have today don’t get used because they are too complex, not well understood, and pay off too far in the future.

We can’t expect a local landscaper to hire three disabled guys in the summer, pay them all season, and then wait to get his $50,000 credit from the government next April. And he won’t even get the whole fifty grand, if he doesn’t owe fifty in taxes. How does he feel? Simple - he won’t do it. He will hire non-disabled workers and get his benefits in productivity and billings right now.

The present credit systems, which overlook that essential truth, are non-starters for those reasons.

The WDC might be capped at a certain dollar figure, and participants in the program might have their disability rating re-evaluated every few years. It’s quite possible that many less disabled participants would work their way out of the program and end up as regular market rate employees. Those who remained disabled would continue to qualify for subsidy, thereby remaining attractive to their employers indefinitely.

What do you think of this plan? Could it work? Would people embrace it? Is it even remotely possible, given where our country is now?

I await your thoughts

John Elder Robison

A Day at the Circus

noreply@blogger.com (John Elder Robison) — Thu, 27 Sep 2012 15:06:00 +0000

I have always loved the circus. For the past fifteen years I've had the privilege of photographing the Hanneford Circus at the Big E Fair in West Springfield, MA.

The circus has the same name every year, but the cast of stars is ever changing.

West Springfield's Big E is one of North America's leading fairs, and they attract the top talent in the business year after year. Here are a few scenes from this year's production:

Some poetry from Scott Lentine

noreply@blogger.com (John Elder Robison) — Mon, 24 Sep 2012 13:21:00 +0000

I'm pleased to showcase some poetry from Scott Lentine, a 25 year old man with high-functioning autism (PDD-NOS/Asperger's) from Billerica, Massachusetts.

Scott works as a public policy intern at the Arc of Massachusetts in Waltham, where he tries to persuade people to support key legislation that will help improve of individuals with developmental disabilities by giving them improved employment, health care, and social services well into adulthood.

I'm sure Scott will welcome your comments and thoughts . . .

Just a Normal Day

Never knowing what to say

Never knowing what to do

Always looking for clues

Just a normal day

Feeling unsure

Totally perplexed with everyday life

Always on edge never certain

I wish I could lift this curtain

Needing to constantly satisfy my need for information

Always online searching for new revelations

Going from site to site

Obtaining new insights every night

Trying to connect with people my age

Attempting to reveal my unique vision

But ending up alone and unengaged

Feeling like my needs a total revision

Just a normal day

Can’t You See

Can’t you see

I just want to have a friend

Can’t you see

I need the same connections in the end

Can’t you see

I want a good job

Can’t you see

I need to have stability and dependence and part of the general mob

Can’t you see

I want to be independent on my own

Can’t you see

I want to be able to have my own home

Can’t you see

I want the same things as everyone else

Can’t you see

I want to be appreciated for myself

The Ode to the Autistic Man

Try to understand the challenges that I face

I would like to be accepted as a human in all places

Where I will end up in life I don’t know

But I hope to be successful wherever I go

I would like to expand my social skills in life

Making new friends would be very nice

Stand proud for the autistic man

For he will find a new fan

I hope to overcome the odds I face today

Increased acceptance will lead me to a brighter day

By the age of 20, I will have made tremendous strides

I know in the future, life will continue to be an interesting ride

I have made new friends by the year

I will be given tremendous respect by my family and peers

I hope to get noted for bringing the issue of autism to the common man

So that autistic people can be accepted in this great land

Stand proud for the autistic man

For he will find a new fan

I hope to overcome the odds I face today

Increased acceptance will lead me to a brighter day

Join me next week for the Autism Law Summit - Washington DC

noreply@blogger.com (John Elder Robison) — Wed, 29 Aug 2012 13:28:00 +0000

Please join us for the 7th Annual Autism Law Summit at George Washington University in Washington D.C. from September 7-9, 2012. I will be speaking at breakfast on Saturday, September 8.

The Autism Law Summit brings together parent advocates, service providers, legislators and lawyers from across the country to discuss the most recent information on securing, implementing and enforcing insurance coverage for autism. Topics will include 1) updates on state autism insurance reform; 2) how to advocate for your self-funded health plan to adopt and autism benefit; 3) the impact of Federal Health Care Reform (PPACA) on the autism community; 4) recent litigation to secure coverage for ABA; and much, much more!

Registration is required; the event page is here

http://www.pingg.com/rsvp/kq4adq5yjzfjimxt3

Here is a direct link to the agenda as it stands now

https://dl.dropbox.com/u/3249707/Summit%207/Summit%20agenda%2020120827.pdf

RAISING CUBBY - A father-son story of Asperger's tractors, trains, and high explosives

noreply@blogger.com (John Elder Robison) — Sun, 19 Aug 2012 15:54:00 +0000

Over the past ten years, at least a hundred memoirs have appeared, each telling the story of a mom raising a child with autism. In those tales, the moms are heroic, and the kids are troubled. Some books are triumphant, while others end with defeat. In every case, the kids and their moms are front and center. But where are the dads?

I decided to address that question by telling my own story of parenting.

In my story, the dad's role in child rearing is fully revealed, and many secrets of fatherhood will be shared, some for the first time ever in print. Some secrets are shocking, while others are enlightening. A few are even amusing, though I view all of them with the greatest of gravity. Among the secrets I reveal:

How to mark your newborn child, and be protected from "swapped at birth?" exposes forevermore;
What to do with a kid who won't go to sleep;
How to tell the difference between nuclear powered robotic farm animals, and natural born creatures;
Imaginative and creative uses for grandparents;
The true story of Christmas, including the secret location where coal for children's stockings is stored;
The best ways to deal with monsters;
How to build Vegetable Artillery;
How to buy your own railroad;
What to say when Federal Agents come calling.

Armed with this story, any prospective dad will be able to enter into parenthood fully armed and prepared for whatever may come. Dads who already have children will get new ideas for fun and exciting entertainment. Moms will gain remarkable new insight.

Family pets will feel more secure.

You can preorder your copy from Amazon here

You can preorder from an independent bookseller here

A Few Musicians I've Photographed

noreply@blogger.com (John Elder Robison) — Wed, 25 Jul 2012 01:08:00 +0000

I started working in music at age 16, when I dropped out of high school and joined a band.

I spent the 1970s building sound equipment, special effects, and custom instruments for musicians. In the 80s I left the music business to focus on more commercial engineering work. In the 1990s my brother worked in advertising, and one of his accounts was Nikon. He got a few cameras out of them, and sent one to me.

That started me on a new interest - photography. It took me a few years to acquire the skills of the photographer's trade. By 2000, I had developed my own style, which you can see below.

My brother quit advertising when his book Running With Scissors came out. I was working on cars then, looking for something creative to do . . .

One of the first places I turned when I went looking for subjects to photograph was the world of music. Here are a few samples of that work.

I've remained interested in photography to this day. I photograph performers of all sorts, in all sorts of places.

You can see more of my images on my public Facebook page

You can also subscribe to updates at my regular Facebook page

Rick Springfield, with a background of fog

Picking up flowers after the concert. It's amazing, how many people threw flowers on the stage during the concert

Guitar with the great George Jones

Def Leppard captured in fall, 2000

Clint Black on the outdoor stage

John Sebastian of the Lovin Spoonful plays Do You Believe In Magic?

Cowboy of the Village People turns fifty

Frankie and the Teenagers are still on the road, fifty some years after Why Do Fools Fall In Love?

The view from the monitor console

The Symphony's First Bassist looks out at the audience

Nashville

Boulder, Rocky Mountain High

Del McCoury and his bluegrass pickers. I took these photos with a Canon G9 pocket camera, just to see if it could be done

Journey

This is Barry Gaudreau of Boston, up close

Jimmy Hopper in fog

Thoughts from the latest autism treatment grant review

noreply@blogger.com (John Elder Robison) — Tue, 24 Jul 2012 12:38:00 +0000

I’ve just come from this summer’s Autism Speaks treatment grant review, and I’d like to share some thoughts about our most recent work. I’m very pleased at the direction we are headed. Changes were evident the moment I entered the meeting room. We had fresh faces representing new branches of science and engineering, and a real sense that we need to take action and translate recent years work into tangible benefit for the autistic population.

To understand what went on, I should begin with a little background on the review is conducted. Most large foundations and the Federal government use a similar process; here’s how it works.

The funding organization first sends out a request for proposals. In that, they spell out what they are looking for. In this instance, Autism Speaks was looking for innovative proposals that led to new ways of treating or remediating some aspect of autistic disability.

Researchers from all over submitted applications. Over 100 came in. Of that number, roughly 70 were deemed suitable for serious consideration. Those proposals were handed out to reviewers who had expertise in those areas of work. Our reviewers are drawn from academia and medicine.; some serve as members of the permanent review board while others join for one session only.

The proposals were each examined by three reviewers, who assigned scores from 1 (wonderful) to 5 (poor). Each science reviewer was assigned 6-10 applications; a fairly heavy workload given the volunteer nature of this work.

The scores were ranked, and the administrators selected the top thirty-some proposals for more detailed discussion based on those initial scores. Those were the applications we reviewed this week in San Francisco.

The applications were discussed in a somewhat randomized order, one at a time. For each one, the first assigned reviewer began by stating his score and describing the proposed work. The second and third reviewers added their comments and scores, after which the proposal was up for discussion. Any of us could ask questions, or express our opinions as to why the proposed work should or should not be supported, or how the proposal might be modified or improved.

We can only fund a fraction of the applications received, and we do our best to give constructive feedback when we turn a proposal down. Maybe we think the goals are too ambitious, or some part of the methodology is not well enough thought through. Perhaps we think a collaborator with different skills (software design, for instance) might be needed. Whatever out thoughts, they go back to the applicants with the suggestion that they keep refining and reapply.

When the discussion ends (usually after 15 minutes or so) we all vote on the proposal and our votes are averaged to get the final score. In that system, a passionate critic or supporter (like me) has the ability to move everyone’s scores up or down based on their comments. That means any one of us can exercise greater power than one might expect given the size of the board.

I was very happy to see how the makeup of the review group has changed over the past few years. Past boards were dominated by geneticists and medical people. This board had computer science experts, robotics experts, and experts from speech pathology, psychology, and psychiatry. That’s great to see because those are the disciplines that will deliver much of the practical help we need. Since autism affects us in many and varied ways there was a lot of variety in the proposals we discussed this week.

There were only a few proposals involving medication, something I found interesting. As more than one scientist pointed out, we have yet to find a drug treatment for any of the core symptoms of autism. We treat the conditions that go with it – anxiety and depression for example – but the core problems remain untouched. Yet medicine still holds promise, especially in light of emerging knowledge in genetics and biology.

Last year I wrote about some exciting work at Cold Spring Labs, where scientists found a connection between a genetic error and sensory sensitivity, and followed up that discovery with the identification of a possible drug treatment. That work was not part of this week’s discussion but it’s an example of how we will eventually have drugs to remediate some aspects of autistic disability.

The idea of these potential drug therapies is simple to describe, but extremely hard to implement. Geneticists find a coding error that’s linked to autism. That error causes more or less of some chemical to be made in our brains, which in turn changes the way they develop in a maladaptive way. With that knowledge, chemists develop drugs that (hopefully) address the chemical imbalance and facilitate more normal brain development or function.

That work holds significant promise for the most crippling aspects of autism. But what’s being done for people at the other end of the spectrum; those who are not so obviously disabled but who still face substantial challenges with executive function and social skill? That question was a major focus of this week’s meeting.

Quite a few proposals were directed at the development of better organization, stronger social skills, and other problems that challenge people like me every day. We’re looking at how sleep dysfunction adds to disability, and what to do about eating problems. We’re looking at practical adult issues with new therapies to help us succeed in school and employment.

There has been a great outcry for this type of work from the autism community and I’m delighted to see researchers are responding and the funding agencies are coming through with support. It will be a few years before you begin reading results in the journals but this is the first step.

I was also very happy to see that a large percentage of the proposed work would benefit autistic adults, as opposed to children. Indeed, the percentage of proposals that addressed teen and adult issues was the highest I’ve seen yet.

Many if not most of the therapies we discussed were directed at the more verbal end of the autism spectrum. The challenge there is that people often lack understanding of why they should say or do a particular thing, and teaching a rote response (the behavioral method, exemplified by ABA) comes across as mechanical and fake. It’s far harder to teach this deeper understanding (which some NT people have instinctively) but this newest work proposes to do just that, in several areas.

The therapies we discussed were based entirely on talking. Personally, I’d like to see the power of talk therapy augmented by new medication or tools like TMS but we are not quite at that stage in the research. I can’t wait till we are.

The whole idea of this kind of therapy is to help those of us on the spectrum make our best possible lives. That goal is in line with the reality of life for many if not most of us on the spectrum. We don’t seek “cures” or fundamental change but we need tools to help us succeed at the levels we know we can.

At the end of our meeting we talked about another pressing issue: the need for a tool to evaluate changes in quality of life for people on the spectrum. To my surprise, no good measure exists today. If we want insurance to cover the new therapies we are funding, we’ll need to show that they really help. Development of QOL measurement tools will be vital to this effort.

That brings us to the next step in this process: delivering the fruits of research to the population who wants help. Right now, two things hold us back – lack of insurance coverage and clinician training.

Recent research initiatives have already produced promising therapies like PEERS and Unstuck but they are not available to many people because health insurance plans won’t cover them. A good QOL measure for new therapies would make a powerful argument for insurance coverage. Ultimately, though, resolution of that problem lies in the realm of insurance legislation and not science. Until we solve that social problem the best of what researchers develop will remain out of reach for most families.

The other issue – clinician training – is one we must solve with additional funding. When a new therapy is developed the researchers need to train a staff that will in turn train clinicians. That training work must be supported by yet another grant, and those funds are very tight. Right now many promising interventions remain relatively unknown for that reason.

Look for a press release in the next few months describing the final choices for funding. When you read about the newest research remember this is how it was shaped and chosen.

The KISS guitars, now and then, in words and pictures

noreply@blogger.com (John Elder Robison) — Sun, 22 Jul 2012 21:30:00 +0000

Many of you have read about my time on the road with KISS and other bands. I've done a number of interviews, and of course there are the chapters in Look Me in the Eye and Be Different.

I realized there is no archive of photos to go with the stories and I've decided to set that straight.

Here they are, in no particular order. Perhaps I'll come back one day and rearrange them . . .

This is me, circa 1979:

And here I am today:

Kinda different, huh?

This is Ace Frehley, playing our original light guitar on stage with KISS

That guitar was a modified Gibson Les Paul TV. We routed out the face of it, and embedded a circuit board with almost 1,000 incandescent lights. We set it up to do stripes (you can sort of see that in the photo) and them flash the whole border at the end.

The lights were powered by a Ni-Cad battery pack and the music was transmitted via a Shaeffer Vega wireless rig so the whole thing was cable free. There was a special XLR-type plug in back to connect a battery charger between sets.

Ace played this guitar on a number of songs over the years but the one it's most famous for is New York Groove. He'd start the guitar while facing back in the corner of the stage. The audience could see something flashing but could not tell what. He'd walk out backward, turn round, and they would just go wild.

I describe that scene in the opening passage of my book BE DIFFERENT. I was in my early 20s when we made these guitars. I am a self-educated audio and electrical engineer. I met the guys from KISS in New York, while I was working as the American engineer for Pink Floyd's sound company, Brittania Row Audio.

We built all KISS's custom guitars in Massachusetts but I had to go on the road to fine tune their development. I was on the road for all the KISS tours of 78-82 and then the shows with Ace as Frehley's Comet after that. Here I am working on another of the light guitars, on the road in some hotel:

If you look close you'll see we added a layer of baltic birch plywood to the back of that guitar to thicken it. That was to allow even more lights (for big halls) and microprocessor control. Here I am in the Russell Hotel, New York, when that guitar was new.

Here I am, in my back yard, with the same guitar a few years later when it came back for service

I designed all the special effects guitars KISS played in those years. I also created a fair bit of the electronics they played through. That included the light guitars below, the smoking guitars, the rocket guitars and the laser guitar for 1979, among many.

Long Island luthier Steve Carr did the fretwork and tuning to make our creations play. He also did the metallic body finishes and the custom inlays.

I designed the electronics. My then-girlfriend, later-wife, and current ex-wife Mary Robison did the assembly. My friend Jim Boughton did the mechanical engineering and fabrication.

Today Mary and I have a son, Jack. We're not married anymore (I'm remarried) but we remain close. Here they are at our house with one of their projects and Oigy, the Imperial War Pug.

Here I am this spring, with master luthier Jim Cara, who has followed in the custom guitar tradition. Check out his story here.

Finally, here's my son with the original light guitar this spring. Ace has sent is back to us for refurbishing.

People still ask if we can make more of these instruments. Actually, we can. Check out my son's web site here, with a video of me and a brand-new light guitar using today's LED technology

Robison Industries

If you'd like to read more, start at page 112 of my book Look Me in the Eye

Then you can continue with the intro to Be Different

In a few more months, you'll be able to read about my son and the light guitars today in RAISING CUBBY.

I'll stop back soon with more pictures from my time in music.

Woof

RAISING CUBBY is coming

noreply@blogger.com (John Elder Robison) — Mon, 16 Jul 2012 14:54:00 +0000

It was one of those father-son afternoons we remember . . .

We stood at the fish pier, watching feral children haul misshapen sea creatures out of the water as they chattered furtively. A grizzled old man stood beside us. "I had a kid once, too," the old man said. "But it didn't last. Kid misbehaved and mouthed off so much I got fed up. Sold him to a Sumatran reptile trader, and never looked back."

"You better not sell me," Cubby said. And I didn't. The result:

RAISING CUBBY, my newest book. Coming January 15. Freaks and zombies included.

http://www.amazon.com/Raising-Cubby-Adventures-Aspergers-Explosives/dp/0307884848

Look Me In The Eye

Writing Retreats in Beautiful and Peaceful Places

How do you know if you're on a good path?

On The Road Again - the RAISING CUBBY tour

The Imperial War Pug

Tugs

RAISING CUBBY is coming!

What Have We Done for the Autism Community?

Can We Outgrow Autism?

Interagency Autism Coordinating Committee meets on Jan 29

Ms. Lina PerezOffice of Autism Research CoordinationNational Institute of Mental Health, NIH6001 Executive Boulevard, NSCRoom 6182ARockville, MD 20852Phone: 301-443-6040E-mail: IACCpublicinquiries@mail.nih.gov

The Leica, and rangefinder photography in today's world

Aspergers and Violence - Let’s Stop the Rush To Judgment

Autism - The Invisible Cord: A Siblings Diary

Are Siblings Really "Invisible Victims of Autism?"

KIRKUS REVIEWS on RAISING CUBBY

Guest blog - Asperger's and Sibling Rivalry

New York Magazine and the autism spectrum

A Modest Proposal for Autistic Employment

A Day at the Circus

Some poetry from Scott Lentine

Join me next week for the Autism Law Summit - Washington DC

RAISING CUBBY - A father-son story of Asperger's tractors, trains, and high explosives

A Few Musicians I've Photographed

Thoughts from the latest autism treatment grant review

The KISS guitars, now and then, in words and pictures

RAISING CUBBY is coming

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 6182A
Rockville, MD 20852
Phone: 301-443-6040
E-mail: IACCpublicinquiries@mail.nih.gov