Saturday, February 6, 2016

Philanthropy in Autism - A New Direction is Needed

One of the things that’s seldom mentioned is the role of philanthropy in autism.  By directing their donations, private philanthropists have significantly shaped the direction of both autism research and the public image of autism.

In 1977, Nancy Lurie Marks found nowhere to turn when she looked for help for an autistic family member. She would later write, “Autism was a condition which received little public attention and attracted scant interest or funding in the scientific, medical and educational arenas. [My] vision and hope . . . was to undertake a long-term commitment to gain knowledge about autism; to help individuals and families with autism; to bring autism openly into the public eye; and to encourage the free exchange of information about autism.”

Mrs. Marks would go on to donate millions to researchers at Harvard’s teaching hospitals; at Yale, and at other schools.  She would also support residential and educational programs for people with significant autistic challenges.

 In 1994 Jim and Marilyn Simons established the Simons Foundation to support research into science, health, and education.  In 2007 the foundation announced its autism research initiative.  Today Simons SFARI is the largest private funder of autism research in the world.  Like Mrs. Marks, the Simons family was initially drawn to autism research by experience with autistic family members.  

In 2005, Bob and Suzanne Wright founded Autism Speaks to pursue a cure for their autistic grandchild, Christian.  The Marks and Simons Foundations were self-funded, and pursued their mission quietly.  From the beginning, Autism Speaks was different.  They raised money from donors, and they spent a great deal of that money on marketing and publicity, most of which portrayed autism as a scourge and public health crisis.

By 2010 it would be fair to say that Autism Speaks dominated the public discussion of autism in America, even as the Simons and Marks foundations quietly directed major research initiatives. 

One thing all three of those groups have in common is this:  Their founders saw autism through the lens of family members with significant degrees of disability.  They held differing opinions on why their family members were autistic, but they agreed that autism was a serious disability that had been ignored for too long by the medical community.  All three organizations viewed autism as primarily a medical problem.

That viewpoint was consistent with the views of leading psychiatrists and physicians.  At the time autism was said to be crippling, and untreatable.  In their own way, those three families resolved to change that. Their viewpoint had evolved from the writings of Leo Kanner, the Hopkins psychiatrist who described autism to Americans in 1943.  Kanner and the doctors who followed him saw autism as a rare and debilitating condition.

Consequently, the research pursued by those three foundations was aimed at finding the causes of autism – be they genetic, biological, or environmental.  The goal was nothing less than total cure.

Autism Speaks reinforced the public’s perception of autism as a disease to be cured by their publicity efforts.  Most people were completely unaware of autism before Autism Speaks came on the scene, so their story line quickly became the one the public accepted. 

The founders of Autism Speaks chose a divergent path when they seized upon the idea that vaccines were the likely cause of autism.  While Lurie Marks and Simons poured millions into basic understanding, Autism Speaks put similar amounts of money into vaccine studies, which proved nonproductive.

Meanwhile the definition of autism shifted, thanks in large part to ongoing research efforts.  Another thing that shifted the description of autism was the rediscovery of the work of Dr. Hans Asperger, who had actually formulated a description of autism in 1938 - well before Kanner. His work was done in Austria and English-language awareness of it was lost for many decades after the Second World War.  In Asperger’s view autism was quite a bit more common, and he recognized a part of the population that was touched by autistic traits without being totally disabled.  In fact, Asperger even remarked that a touch of autism might be essential for creative genius. 

In the 1990s Asperger Syndrome was added to both the ICD and the DSM as a form of autism, and clinicians began to recognize large numbers of verbal and less-obviously impaired people as being on the autism spectrum.  By 2007, as Marks, Simons, and Autism Speaks were getting established, some of those newly diagnosed people were growing to adulthood and showing the world that Asperger was right – some autistic people were extraordinarily disabled, but others were exceptionally gifted.

Over the next few years, studies like Brugha would show that autism has existed unseen with a steady prevalence in the population as far back as we could study.  Genetic studies suggest something similar – autism has probably been part of our genome for a very long time.  Meanwhile, autism continued to be diagnosed by behavioral observation, and some psychiatrists made a specialty of using those parameters to retrospectively diagnose characters in history.  Even though that work was controversial, it further supported the view that autism has always been here.  

By 2012, autistic adults had begun to appear on the public stage in considerable numbers.  Many were quite critical of the disease model of autism, and they viewed the idea of cure as an attack on an essential part of the human genome.  At the same time, autistic people told stories of very real suffering, and they very much wanted relief.  But their suffering was not – for the most part – directly related to their autism.

Instead, people told of suffering from seizures, gastric distress and pain, anxiety, depression, Tourette’s and a host of other conditions we now call the co-occurring conditions of autism.  People who are so affected tend to want help, and they see their problems as medical in nature.  Their concerns are absolutely valid, and it’s a great shame that we have made so little progress in addressing these concerns.

Critics of research policy began speaking out about this.  They asked why funding sources continue to direct so many of their research dollars to low-level biological studies with translation horizons measured in decades, when people are suffering now.  A schism began to emerge, where foundation executives talked of the breakthroughs they were making in research, just as members of the autism community – parents and autistics alike – became increasingly critical of the absence of tangible help for autistic people.

They said: Basic studies are great, but what have you actually done for me (or my child)?

Technology began helping some formerly non-speaking autistics to communicate.  A small minority remain unable to communicate effectively and it's no doubt a source of great frustration for both those autistics and their families. So far, research has brought that group little relief.

Meanwhile, other autistics began to challenge their limited acceptance in society.  They made the eloquent case that autistics are different, not less, and they asked for reasonable school and workplace accommodations.   Autistics with sensitivities to light or sound asked for “soft” spaces.  Autistics with social challenges asked to work online, where there disability is minimized.  Schools and corporations were asked to change their culture and workplace to accommodate people whose styles of learning, working, and living were different from what was presently accommodated.

By 2012, the question was, who would fund accommodation research?  Who would help schools and workplaces to change?  The original foundations – Lurie Marks, Simons, and Autism Speaks – retained their focus on basic science.  Their interest in this new direction seemed limited.

Corporations began looking at how autistic people might fit into their workplaces.  Some saw this as disability accommodation, but others saw autistics as a uniquely skilled group.  Nonprofits like Specialisterne emerged to help employers benefit from the special abilities of some autistic people.

Colleges explored the idea of teaching neurodivergent students.  Institutions like Landmark College opened, and focused exclusively on people with autism and other developmental differences.  Traditional schools like William & Mary and Drexel began exploring ways to integrate neurodivergent students into existing college structures. 

With this shift in the perception of autism and its challenges there is a gap in philanthropy.  The three foundations that first addressed autism have put hundreds of millions of dollars into basic research.  They have funded the development of better screening tools.  They have begun to unravel the roots of very profound disability in some of us.  They have supported research into treatments and therapies that are beginning to bear real substantive fruit.

What they have not done is fund major studies into better societal accommodation.  Very little has been done to help autistic people find work, keep jobs, and build stable, independent, and happy adult lives.  That stands as a critical unfilled need in the autism community.

At the college level, two smaller foundations have embraced this goal.  The Arnow Family Fund gave a grant to William & Mary to establish its neurodiversity program in 2012, and W&M became the first major American university to offer credit courses on neurodiversity.  In 2015, the Olitsky Family Foundation also embraced neurodiversity, supporting the work of William & Mary, Drexel, and Specialisterne among others. 

William & Mary made neurodiversity part of the college culture, just like racial diversity was embraced in the sixties.  Embracing neurodivergent students was a part of their mission, but a larger goal is teaching the whole student body about the value of autistic people, and others with neurological differences. 

Drexel has a more vocation-oriented approach, working on ways to help neurodiverse students integrate into workplaces while still in college; teaching work skills alongside academic studies.  Drexel began a major initiative to study post high school and college outcomes for autistic students, and learn from those insights.

But they can only go so far on their own.  My hope is that more philanthropists will follow the lead of Arnow and Olitsky, and fund quality-of-life focused research to help people who live with autism today.  Simons and Lurie Marks have shaped up as quiet, solid leaders in basic science.  Autism Speaks is searching for a new direction, and may yet chart a course that better benefits the broad autism community.  Like Simons, the Olitskys are becoming quiet leaders in this new arena and the Arnow family will always be known as the first to fund neurodiversity in college.

We’ve put millions into basic genetics.  It’s time to put similar investment into therapies to help make friends, keep jobs, and organize our lives.  It’s time to explore the ways in which autistic people can best fit into the colleges and workplaces of tomorrow.  It’s time to invest in our schools, to show them how to match ways of teaching to our different and varied ways of learning.

There’s a need for groups like Simons and Lurie Marks, and they’ve done great work.

But the community is speaking out, and identifying an additional set of needs that are frankly more pressing.  Groups like Arnow and Olitsky have recognized the challenge, but they need help.  Who will join them?

John Elder Robison 

Footnote:  There are many other philanthropists funding autism research, and I mean no disrespect or marginalization to those not mentioned in this article.  As many as there are, I stand by the article's premise that a new "primary need" is emerging in the autism community and we need philanthropy to rally to it..

John Elder Robison is an autistic adult and advocate for people with neurological differences.  He's the author of Look Me in the Eye, Be Different, Raising Cubby, and the forthcoming Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Virginia.  

The opinions expressed here are his own.  There is no warranty expressed or implied.  While reading this essay may give you food for thought, actually printing and eating it may make you sick.

Thursday, February 4, 2016

Photographing From a Helicopter - some basic advice

You’ve arrived in some distant land, and you have a few days to come back with an array of publishable images.  It’s easy if you want to photograph people in common tourist locations.  But what if you are out for something different?  If you are like me, you’ll want to shoot nature without the people, which means photographing in isolated spots.

You can load your gear in a four wheel drive vehicle and drive to some pretty amazing places, and you can even get back out again undamaged if you take reasonable precautions.  But as versatile as a 4WD is, there are places a motor vehicle won’t take you.  For those, a helicopter may be the answer.  

Helicopters can take us to remote locations and save days of trekking in and out.  They can take us where there are no roads, and provide a unique point of view as a flying camera platform.  We can look into areas that are closed to foot travel – like flood zones or active lava fields. 

Even at 500 feet you'll feel the heat of a lava field like this.  (c) 2016 John Robison 

Many resort destinations and most big cities have helicopter services.  They may run multi-passenger sightseeing and photo tours, offer birds for charter, or both.  If you are working for a client with deep pockets, the best results come from making a flight plan and chartering the helicopter.  The only drawback is cost – charters start at $1,000 in most places and can hit five figures pretty quick. 

Hughes 500 with doors off - an ideal 4 seat photo platform.  Courtesy Paradise Helicopters, Hilo, HI
Image (c)2016 John Robison

Multi-passenger tours are usually a lot less costly; anywhere from $150 to $1,000 depending on length and location.  But there are several issues with tours that a photographer should be aware of.  First is the helicopter itself.  Many tours use larger choppers with three-wide seating in back. That means you could be stuck in the middle.  The next issue is speed – to keep costs down, tours tend to be conducted fast so it will be hard to get good images. Finally, there are the windows – a multi passenger charter will almost always have doors in place (for safety, quiet, and comfort) which means you have to shoot though the windows, complete with reflections, scratches, and limited fields of view.

The best option is a flight where the pilot hovers or circles slowly above photo targets, and flies with the doors off.  This will allow a clear field of view, limited only by the photographer’s courage and flexibility.  Not every air service flies doors-off, so you should investigate that options before making a commitment.  You should also make sure you are up for it.

Flying in a helicopter without doors is a much more intense experience than conventional touring.  The first thing you notice is the wind, which you will feel as soon as the pilot opens the throttle to take off.  Without doors there is a constant blast of air through the cabin.  Changing lenses, memory cards, or batteries is absolutely out of the question.  You’ll have your hands full just holding onto the camera.

The next concern with doors-off flying is that you look straight out of the chopper.  There is nothing between you and the ground but the safety belt.  Be sure it is latched!  When the pilot reaches a photo site, he will likely heel the helicopter onto its side, allowing you to look almost straight down.  Needless to say, some photographers find that quite disconcerting.  Do not drop your camera in alarm.

When you are in the air you’ll be in a world of sensory overload.  For me, it’s all I can do to press the shutter button – I need to make sure all the camera settings were done beforehand.  I’ll go through them next.

Lava pours from the left side of the volcano (c) 2016 John Robison

Shutter speeds should be 1/1000 of a second or faster to minimize motion and vibration blur.  Don’t let the camera touch any part of the helicopter while shooting.  Some people say you should shoot wide open for minimum noise, but I prefer to stop down to f5.6 where many pro lenses are sharpest. That gives a little more leeway on focus. 

Remember a camera that autofocuses perfectly on the ground may be a little bit less perfect with the vibration of flight and wind buffeting the lens barrel. Flying makes for a much more adverse shooting environment than most ground-based settings.

Always shoot in “continuous high” mode and get bursts of 3-4-5 shots of anything important.  That way you are likely to have at least one shot with no rotor blades at all, and if necessary the multiple frames will allow you to edit a blade out of a critical shot.  Anytime you shoot to the sides the blades are a concern.  And the worst thing is, you won’t have any idea till you process the photos after landing. 

You may think you won’t have spinning blades in your images but it’s impossible to avoid as the helicopter banks.  Any shot that includes the horizon mid-frame can have blades in the image.  The only clear field of view is straight down, and that is very hard to do because you are in the full force of the wind with an open door.  Closed door, rotor blades are almost always going to be in the frames.

This lava field shot is a low angle, but there's still a blade in the shot.  Luckily several other shots in this burst are clear.  This is why you should always use CH shooting mode - the blades are invisible when shooting.  (c) 2016 John Robison

The next question is what lens to use.  Most helicopter shooting is wide angle, and the photojournalist’s 24-70 2.8 is a great choice.  Wider lenses can bring you in close but they will be very difficult to lock onto a target unless the pilot can hover (think charter, not tour) and they will need even higher shutter speeds to be clear.  Image stabilization seems to be of little use at these shutter speeds and vibration levels.  Pro lenses are going to give markedly better results.

As for the body – the more rugged the better.  I am a Nikon shooter and have used both D4s and Df bodies with good success.  The Df has the advantage of being smaller, which counts for a lot in a small helicopter.  All helicopters are hostile environments for equipment.  The chances of the camera being slammed and shaken are very high.  Be sure you have a good strap and make sure it’s tight around you before takeoff.

Remember – the bigger the lens the harder the wind will hit if you stick it out the doorway.  It’s going to be impossible for most people to hold anything more than a 24-70 doors off for that reason.

Do not use a lens shade when flying doors off - it will be blown off in the wind.  You may want to use a polarizer, but the need to spin it adds one more complication and the loss of light may cause trouble with high-ISO noise.  Remember the sensory overload thing . . . keep the camera as simple as possible in the air.

Be sure your pockets are all zipped.  Wear a sweater and a windbreaker.  Whatever the ground temps you will often find yourself flying in air 20-30 degrees cooler and when you add a 75mph wind . . . it gets chilly.  If you wear glasses I strongly suggest an elastic strap tight against the back of your head.  No caps or scarves allowed.

The pilot should give you a headset with a microphone to talk back.  Most headsets are noise cancelling, and they will help hold your glasses in place.  The most common are the David Clark aviation headsets, which do an excellent job mitigating noise.

And one final bit of advice – don’t forget to take a moment and actually look at the scenery. 

Helicopters can bring you to otherwise inaccessible places (c) 2016 John Robison

John Elder Robison is a NY Times bestselling writer and photographer.  He's the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Virginia. 

The opinions expressed here are his own.  There is no warranty expressed or implied.  While reading this essay may give you food for thought, actually printing and eating it may make you sick.