Sunday, October 20, 2013

Neurodiversity and Me - a few questions from William & Mary students


The College of William & Mary contains the oldest academic buildings in America


I’ve been asked a number of questions about neurodiversity.  Here are some of them, for consideration and discussion.

There doesn't seem to be a standard definition of neurodiversity; what exactly do you believe neurodiversity to be?

I believe neurodiversity is the idea that neurological differences like autism and ADHD are the result of normal, natural variation in the human genome.  This represents a new and fundamentally different way of looking at conditions that were traditionally pathologized; it’s a viewpoint that is not universally accepted though it is increasingly supported by science.  That science suggests conditions like autism have a stable prevalence in human society as far back as we can measure.  We are realizing that autism, ADHD, and other conditions emerge through a combination of genetic predisposition and environmental interaction; they are not exclusively the result of disease or injury. 

We are not sick.  We are different.

Natural neurodiversity confers gifts, disabilities, or most often, a combination of both.  Some people are mildly affected; others are touched with a heavy hand.  Neurodiverse people may be highly intelligent, intellectually disabled, or anything in between.  They can be male or female, short or tall.  We make up perhaps 10% of the human population, and we are everywhere.

Some of us - those at the upper end of the Asperger's spectrum, for example - are functional but eccentric, and gainfully employed.  Others - some Fragile X people being an example - are very severely disabled and live in group homes.  "Naturally occurring" does not mean gentle or easy; it can be anything at all.  The point of "naturally occurring" is this:  We are not freaks.  We are not "injured and in need of healing."  We are not artifacts of modern chemistry.  We just are.  We want to make our best lives, and move on without blame, shame, or recrimination.  

Look around you – statistics alone tell us there is at least one person with non-standard brain wiring in every decent-sized classroom.  And neurodiversity isn’t just for students.  Faculty and staff are just as likely to have different brains, especially in the sciences.

It’s important to point out that this is about accepting the reality of how people are, not ignoring or dismissing real disability.  Indeed, I think the two concepts go hand in hand.  Acceptance frees those of us who are different to live our lives without shame, while working to remediate disability has as its goal the best possible life quality.  I am a strong supporter of therapies to help people who suffer from autism's heavier hand, or who are put in danger by the way they are impacted.  I'm also a strong supporter of therapies for people who are less disabled but who still want help to succeed to their fullest.  Students at W&M are most likely to fall into this second group.   

My brother has really severe autism.  He can’t talk and can’t take care of himself.  Are neurodiversity people like you opposed to curing him?

Not exactly.  When you say “can we find a cure” I think you are asking the wrong question.  Let me draw an analogy.  When a fellow has one leg, and he wants to get around on his own, we don’t say, “He needs a cure.”  We say, “He needs help remediating his disability.”

He might end up with a prosthesis, or a cane, but he remains a guy with one leg.  Those tools help relieve his disability, which is most realistic help anyone could offer a person in that situation.  There might be times he wishes he had another leg, but it’s not reality, and speculation about a cure in that context is self-destructive and hurtful.  If you are that person, spending your days wishing for a new leg won't get you anywhere.  Spending the same time learning to walk with the prosthesis will get you mobile.  That does not make a wish for a new leg wrong, but it's not productive in light of current reality, especially given the available alternatives.

Naturally occurring autism is much the same.  It’s something we are born with and the older we get, the more it becomes interwoven with the fabric of our minds.  It’s not removable.   That’s why I say “cure” is the wrong word to use. 

No neurodiversity advocate in his right mind would oppose developing tools to remediate disability from autism.  I believe we have much to do, to develop therapies to help people like your brother live their best and most independent lives.  I am a strong supporter of that idea.  I just don’t call it a cure.

What exactly will the course you are teaching at William and Mary focus on?

Well, first of all, I should make clear that I am only one of the people teaching the course.  Josh Burk, Cheryl Dickter, Janice Zeaman of the Psychology Department; Karin Wulf from History; and Warrenetta Mann from the Counseling Center are all involved in teaching or shaping this class and the college’s neurodiversity initiative.

That said, I am the only openly neurodiverse person involved with the project (I have Asperger’s, a form of autism.)  I say “openly” because some people who are different aren’t aware of why that may be, and others who know prefer to say nothing.  I take pride in my differences but for many, neurological difference is a source of frustration or shame.   

That’s one of the things we’re going to talk about in the course.  How we feel about being different, and how we feel about others who are (or are not) different.  Can we help people feel better about themselves and others?  I hope so.

I did not learn about my own autism until I was forty years old, and there are thousands of other middle age people who still have no idea they are touched by autism, Asperger’s, PDD-NOS, ADHD, or other neurodiverse conditions.  Today most people are diagnosed in childhood, but if you grew up 30+ years ago, we did not have the knowledge of those conditions so it never happened.

We want to increase knowledge of neurological diversity just as we have increased knowledge of other kinds of diversity.  The difference is, neurological diversity is usually invisible.  But it’s important to recognize because neurodiverse people at W&M are likely to have a mix of great gifts alongside significant disabilities.  They may be our brightest stars and our most challenged students – all at the same time.    We want everyone to be their best and that means recognizing and minimizing traits of disability while developing strengths. 

To do that, we must first understand our differences and then determine how best to proceed.  We hope this first course will open the door – provide an overview of difference, if you will – and help people who are neurodiverse while also enlightening people who want to work with or help the neurodiverse population.


Beyond teaching the course, what do you hope to achieve at William and Mary?

College can be a scary and challenging place for anyone.  Those challenges can feel a thousand times greater to some neurodiverse students.  I’d like to help those students feel relaxed, safe, and welcome here.  I’d like to explore what they may benefit from by way of accommodations, and how the college can help.

For example, some students have talked about “quiet space;” rooms with soft lighting and low noise levels.  Other students may benefit from social skills courses.  If past experience is a guide, accommodations we develop for neurodiverse students may prove very attractive to a large part of our student body.  This neurodiversity initiative might actually lead the way to making W&M a better place for everyone.

I’d like to see the college create a culture where people are proud to be different, speak about difference, and our individual uniqueness is honored and encouraged. 

I hope William and Mary can take the lead in teaching people who want to work with neurodiverse people in their adult careers – whether those careers are in psychology, teaching, medicine, law, or government.

As a school for smart, high achieving people, it’s right up our alley . . . In his 1944 doctoral dissertation, Hans Asperger wrote: “It seems that for success in science or art a dash of autism is essential.”  Today many people associate Asperger syndrome – a form of autism – with eccentric genius.  Think Sheldon Cooper and The Big Bang Theory.  The smarter you are, the more eccentric you are likely to be.  As one of the top colleges in America, William and Mary is full of exceptionally smart people and I suspect a great many have Dr. Asperger’s “dash of autism.”  Let’s embrace it, and see where it leads!

William and Mary has very high admission standards. Many neurodiverse people have trouble graduating high school, let alone getting into college.  How do you reconcile those things?

It’s true that people with developmental differences struggle more in school, and have lower high school graduation rates.  It’s also true that only the very best students tend to make the grade for admission at the very best colleges.  Here’s an interesting fact to ponder, in light of those facts:

One way neurological differences manifest themselves is by giving people bigger variations in their different kinds of intelligence (mathematical, logical, emotional, etc.)  While the conversation often revolves around our weakest intelligences (because that’s where we need help) it’s also true that we have our peaks.  And if our peaks are higher than those of the “average person” we can be significantly smarter in our areas of excellence.

That does not mean neurodiverse people are smarter as a group - we are not - but it does mean the smartest neurodiverse people will have peak intelligences (in our narrow bands of interest) at the very top of the human range.  The price for that, of course, is the offsetting group at the very bottom of the functional intelligence range.  They too are neurodiverse, but there intellectual limitations render them invisible much of the time.  

If you were a college recruiter, looking for the smartest people in this world, a significant percentage of them would be neurodiverse.  Any college that wants a smarter student body would do well to cultivate neurodiverse students.

Smart people with well rounded educations and a drive to help others are a powerful force. 

At the same time, William and Mary is beginning to recognize that some students who might otherwise be perfect fits here have trouble getting in because of their neurodiversity.  We are looking at how we might work with public schools in Virginia, and the community college system, to afford future students a more equal chance for admission.  Every good college will face this dilemma; William and Mary is at the forefront, charting a course for others to follow.

What if my brother was damaged by vaccine?

The idea that mercury in vaccines causes autism has been discredited in many studies.  Thiomerosal (a mercury preservative) was removed from vaccine with no decrease in prevalence rates.  But does that mean vaccines are 100% safe?  Vaccines are complex and their interaction in the body is not fully understood.  While their public health benefits are undeniable, there is still a possibility that some people are susceptible to injury following their use.

Do some of those people develop symptoms that look like autism?  I don’t know, but concede the possibility.  I also recognize that ingestion of other chemicals – lead, for example – can poison us and create autism-like symptoms that may or may not be reversible.

The kind of autism I am touched by has been constant my whole life, and it has a consistent presentation in three generations of my family.  I see other families where there is no history of autism, and a child who is developing normally regresses into a state of total disability in late toddlerhood.  How does that happen?  It's a big concern to me, and it makes me wonder how many different conditions we are dealing with under the ASD umbrella.  Clearly, a family with a child who regressed would see things very differently from a family like mine.

Wherever your connection to the autism spectrum lies I urge you to respect other points of view even when they differ greatly from your own, as experiences differ too.  That' to me is the heart of neurodiversity and acceptance.

I support research into environmental factors that may injure us and leave us with symptoms of severe autism.  To the extent that damage can be prevented or fixed I support that too, but I recognize it’s a complex question.  So far – despite some people’s belief to the contrary – hard proven answers have eluded us.

Autism that’s a result of chemical poisoning is a very different thing from the condition I grew up with; one that I shared with my late father and now-adult son.

Injuries can also produce some symptoms of autism or other neurodiverse conditions.  While those changes may not be reversible once they have happened we can work toward preventing the injuries in the first place.  The first step is becoming aware. The recent focus on head injuries in sports is a good example of a place where awareness is emerging.

I think we will see significant changes in college sports in the next decade as a result of awareness.  We may see revolutionary changes in our diets thanks to growing environmental awareness.  Being born different is one thing; crippling ourselves through preventable injury or ingestion of chemicals is something else entirely.  No one wants to accept that.

If autism is a natural variation, is it Humanity 2.0?

Attractive as that idea sounds to some, it's not what the science is showing us.  Instead, science is suggesting that some level of autism has always existed in our population.  It's a stable genetic variation.  That does not mean it's better; just different.  It suggests that autism serves some evolutionary purpose whose meaning may not be fully understood.

Some people with autism are uniquely skilled at solving certain problems.  That makes us different, not better.  We complement neurotypical humanity.  We are probably not destined to replace it.  It my opinion, being equal is OK.  We don't have to be better.

Consider this:  For every person like me - who lives independently with autism, there are several more my age who struggle to stay afloat.  The hard truth is, most people with autism and other neurodiverse conditions are more disabled than gifted in modern society.  It's great to embrace our gifts but we have a duty to also recognize how difference limits us as we work to relieve those burdens.

The points I make above were all supported by the Brugha study which examined 7,500 adult heads of household in England last year.  You can find a summary and link in the IACC 2012 Strategic Plan for Autism.

One more thing - Remember that evolution has no heart.  A trait that causes tremendous suffering may persist in our genome if it helps perpetrate the species in some way.  Recognition that a trait is part of us does not mean we should passively accept any suffering it causes.

At what age were you diagnosed with Asperger syndrome?

I was diagnosed in the late 1990s, when I was 40 years old.  I describe the experience in the chapter “A Diagnosis at Forty,” in my book Look Me in the Eye.  Asperger syndrome was not part of the lexicon of American mental health until the American Psychiatric Association published DSM IV in 1994.   When I was a kid, teachers just assumed I was dumb or lazy.  Today we hope they would know better, and sometimes, they do.

The entire constellation of special needs we see today was essentially unknown when I was a child.  Asperger’s, ADHD, dyslexia . . . those conditions and more have probably been around forever but it’s just recently that we have begun to detect them in children and offer help in place of criticism or discipline.

What more could William and Mary, and colleges in general, do to promote neurodiversity?

I think that remains to be seen, and developed.  With the announcement of the Neurodiversity Initiative and the development of this first course we have started down a long road; one with no defined endpoint. 

As psychiatrists look back at the great minds of history they see one example after another of neurodiversity.  If many of the greatest thinkers of recorded history were neurodiverse, would it not make sense to do all we can to encourage the neurodiverse thinkers of tomorrow?

A neurodiverse college is a smarter college, and with all the problems facing our world today, we need all the smarts we can get.

Wednesday, October 2, 2013

An Unexpected Honor

Thanks to the folks at Babble.Com for naming this blog their top autism blog of 2013

John Elder Robison, age 6, in the trees outside the Cathedral of Learning, Pittsburgh

I'm honored that they chose me, especially since I see so much good writing out there in our community.  Who'd have guessed?

They said:  John Elder Robison is one of our favorite writers, and that has nothing to do with his Asperger Syndrome. The fact that he offers tremendous insight into the minds of autistic children is the icing on the cake. Often funny and always thoughtful, he writes about parenting, his personal adventures, and commentary on autism-related news.

In other news, I am honored by this story from New England Public Radio, talking about the school we've opened to teach the Automobile trade to young people with autism and other developmental difficulties.

Really I owe the most thanks to all of you, and my wife, family and friends, for supporting and encouraging me on this journey.  And to the Imperial War Pug for being there to calm me when needed.

Best wishes
John



Tuesday, October 1, 2013

How to photograph concerts


Over the 40 years since I took up photography the field has changed tremendously.  First there was the supersession of film by digital imagers, then the arrival of electronic exposure automation, and now the proliferation of cell phone cameras.  The cameras in modern phones make everyone feel like a pro.  Until they get somewhere challenging, like a concert venue.  That’s where limitations of skill and equipment become obvious.

Yet that was one of the first places I set out to take pictures, back in the 1970s when I was an engineer for Britannia Row, KISS, and other bands.  Back then I used a Polaroid SX70 which made 3x3 square color prints.  I still have some of them today, along with a few of my old passes.

I never knew how to get good close up images at the shows.  Most of my pictures were taken from far away, and many depicted amplifiers and gear instead of people (I am, after all, autistic.)  But it was OK, because my images back then were really just for me and my family.  They sparked my memories and reminded me to tell the stories, and that was enough.

An April Wine First Glance tour pass, and some images from the road with KISS

As I got older, things changed.  I began communicating through imagery, and images like I took back then did not tell a story by themselves.  They simply were not good enough.  I wondered what I could do about the situation, and the answer became clear:  Learn how to take concert photos like a pro.  I had examples to refer to, like these from my days with KISS:


I don't know who took those long-ago images of my guitars and gear (most people would say they are images of Ace Frehley and the KISS crew but I see it differently) but they are a hell of a lot better than anything I could do.  Maybe that's why they are on my wall, and my own SX70 images are in a drawer!

However, times change.  People grow and learn.  Today I'm able to take descriptive images at concerts and with practice and the right gear, I'm sure you can too.

The Beach Boys   Sept 2013
Before we begin (since I talk a lot about the importance of "good equipment") . . . I want to make this point:  The biggest factor in getting good photos is YOUR skill, and mindset. The gear is secondary.  By way of illustration I offer this image of bluegrass legend Del McCoury which I shot from in front of the stage at an outdoor festival using a Canon G9 point-and-shoot camera in manual mode.


Could I have done better with a $7,500 pro-level Canon or Nikon system?  Sure.  But you can get good results with almost anything, even this $250 camera.


So how do you get good photos at a concert?

That’s a question that is answered in several parts.  First of all, look at the pros photographing a big concert.  Note their positions.  They are right in front of the stage, often behind a crowd barrier where they have relative freedom of movement across the front of the stage.  They may be right there on the stage.  And if they are back in the audience they often have very long lenses and solid tripods.

Getting to those places at a big show requires photo credentials.  Depending on where you are, you might get a pass from the venue itself, or you might get a photo pass from the band.  Sometimes you will have both.   Credentials are handed to photographers from the venue or the local news media, national media, and occasionally independent photographers.

Getting credentials is the subject of an article all by itself.  Suffice it to say, credentials mean access, and access means better results.  If you build an impressive portfolio you have a decent chance of getting some recognized media to sponsor you; to agree to run your images.  That can qualify you for those all important credentials.

Credentials for country star Toby Keith
How do you build a portfolio without the credentials?  You start places credentials are not required.   Most nightclubs will let you in with a camera.  The lighting is bad and the rooms are crowded but you can learn to work there and get good images.  Another place you can go is public concerts.  Many cities sponsor free concerts on town greens, and the big state fairs often allow photography at their events.  Those are all good places to learn.

Xfinity Honor Court Stage, The Big E, West Springfield, MA
As for outlets . . . many communities have local papers that may be happy to run your images of local shows.  Having your pictures published in the Yourtown Record will obviously make you more legit when you ask a manager of a venue for a pass to get in.  Self publishing on the Internet is another option, though it won't get you much cred with the bands unless you have a huge following.

The image above shows the main concert stage at The Big E, New England's biggest annual fair.  As you can see there is no barrier in front of the stage, and you can walk right up and shoot to your heart's content.  There are stages like this all over the country.  Just announce yourself to the crew and/or band, and follow any instructions they may have. Watch for signs that prohibit certain kinds of camera (usually video) and stay out of the way of the band and crew. You don't want to piss them off.  Share your shots, and who knows - they may buy some.  That's how reputations are made.

Moving on, the next area is equipment.

It’s possible to get publishable photos with a point-and-shoot camera but consistent professional results are best obtained with professional gear, which in this case is a DSLR with a long lens. The most common lens for concert work is the 80-200 2.8, preferably in the image stabilized version. Systems from Nikon and Canon dominate the field.  I use a Nikon D3s with a D800 for backup and longer reach (the D800’s 30MP sensor can be cropped more)

The concert environment is very challenging for camera automation.  Even the best systems WILL fail to meter correctly at times, and it can happen in any show when the lighting changes to something the camera can’t handle.  The only way to tell how your camera’s exposure meter will cope with a given situation is to try it.  Some cameras can be used in aperture priority metering mode; others cannot.  If the resultant exposure is way off you may prefer to select manual mode and set the shutter and for a reasonable compromise based on the stage lighting. 

Shutter priority and program modes are not useful for concert work because the lens is customarily used wide open so your only variables are ISO and shutter speed.  You want to use the lowest possible ISO for concert work.  You will be forced to pull up dark areas in developing, which will accent high ISO noise.  Higher ISO also means lower dynamic range, and you need all the range you can get for this work.  Obviously the better cameras do better in this regard; concert work is truly a situation where the best equipment will run circles around lesser gear and the state of the art advances every year.
Journey in concert
Responsiveness is another concern.  Ideally you want a camera with very little lag time between pressing the shutter and actually taking the picture.  Good cameras are almost lag-free.  For best results you want to watch the performance through the viewfinder and take shots as they appear.  Expressions and poses are fleeting; often lasting just a fraction of a second.  A camera with a half-second lag to take the photo will not be very useful in that environment.  
Austin Mahone dancers with DJ Rayvon

Focus is another challenging area.  Professional-grade SLRs have multiple selectable focus points.  Many newer cameras have face recognition programs, or other programs to choose the closest subject or the closest person.  I suggest you avoid those operating modes because I have not found them effective in this kind of work.

Instead choose a specific focus point and make sure it is locked on the eye of your subject.  If you make a mistake and lock onto something else like a guitar neck your image will probably be junk.  Depth of field at 200mm-2.8 is very shallow.   This requires a lot of practice . . . it’s easy to lose track of where your focus is locked and lose a whole series of shots by focusing on the wrong thing.

Now we have the most challenging thing of all . . . picking up the camera and putting it to use.  High-end SLR systems are heavy, more so with a long lens attached.  It will take some practice for you to become proficient holding the camera on target and steady.  It took several years for me to become steady enough to get sharp images with a 70-200 lens.  A common rule of thumb says the lowest hand-held shutter speed is 1-2 times the length of the lens.  So the slowest shutter for a lens zoomed to 200 would be 320 or so – somewhere between 1/200 and 1/400 of a second.

In an ideal world that is what you would do, but in the real world, you might need to shoot that image at 1/30 or 1/60 to get enough light.  This is the biggest challenge of this kind of work . . . getting sharp images when light is dim.

All I can offer is this:  Practice does not make perfect, but it does make you better.  People who shoot lots of frames with long lenses DO get better at it. 

What about flash, you ask?  Flash will freeze the action and eliminate much of the shake problem.  But it does so at the cost of washing out the stage lighting which is a large part of the “feel” you are trying to capture.  Also, flash is prohibited at most bigger events.  No one likes to see a flash popping and distracting you as you try to watch a show.

There are some circumstances where you may use flash productively but most of the time you shoot concerts under natural lighting.

Finally we have framing.  Framing is the art of filling the camera frame with the image you envision.  That is the hardest thing of all.  When you begin taking pictures you tend to focus on the spot the focus is locked on.  So you pay attention to a performer’s face.  What else is in the frame?  Is he positioned attractively?  How about the background?  Are there lights behind him, and if so are they silhouetting his head or body, or glaring into the lens?

You may get a good effect from stage lights shining into the lens, or you may have a ruined image.  The only way to know what will happen is by practice.  When it comes to effects from lighting, you will have more editing flexibility if you shoot in RAW format.  That’s what I do.  JPG gives smaller files but some things that are unrecoverable in JPG are easily fixed in RAW.

Eagles guitarist Don Felder

Some performances are held outdoors in daylight.  For those you have to be more vigilant about what's behind the performers.  You don't want an ugly background ruining an otherwise good image.

Jim Peterik (right) and the Ides of March guitarists, Sept 2013

Are there any other reflections in the frame that will give you trouble?  Consider angles in your compositions.   Most people – when they start taking pictures – do straight up and down shots.  That is, people who are standing are photographed standing.  But it does not have to be that way.  Rotate the camera 20, or even 45 degrees.  See how the resultant images look.  Be creative!

This is so important I'll say it again: Always pay attention to the background.  You can photograph the most beautiful singer in the world, but if there's a porta-potty and a dumpster in the background, your image won't be going too far.

One of the things I learned early on was to do my cropping in the camera.  The better you compose you initial shots, the easier your subsequent editing will be.  Some people assume they can crop to zoom; doing so compromises your images because you throw away most of the potential pixels.  Try to strike a balance . . . frame a little big to allow for composition errors, but zoom in close enough to mostly fill the frame with what you want to show.

Remember this:  If you have to ask if you are close enough, you are too far away.  The best concert photos tend to be shot at distances of 20 feet or less; many are much closer.  There is no such thing as “too close” in rock and roll photography  The better known you get,  and the more people appreciate your work, the more leeway you will have to work close – even right up on stage.  That’s where the best stuff is captured.

The image of Austin Mahone below is a good example.  My wife was photographing in "the pit" - the area between the crowd barrier and the stage - when Austin spotted her during his opening song.  The resultant image - with his finger a scant 18 inches from the lens - is striking and could not have been shot from any greater range.

Austin Mahone up close - Maripat Robison photo
This image of renowned background singer Darlene Love (think Rolling Stones, Marvin Gaye, Elvis and hundreds more) was shot from fifteen feet away on the stage during a daylight show.  There's no substitute for proximity.

Darlene Love, as seen in the movie 20 Feet From Stardom
What about using a longer lens?  It won't usually work out, for two reasons. First, the long lens would render the background right next to the subject, where the closeup isolates her with background blur.  Second and most important - as the two images above show - when you are close the performers will sing to you and that magic cannot be captured any other way.

Don’t forget backstage and behind the scenes opportunities, if you have access to those areas.



You may want a different kind of camera for backstage work.  A less conspicuous rangefinder (Leica or Fuji X-Pro come to mind) may let people relax and offer you opportunities you would not have with an SLR.  But you have to earn a place back there first - so tread gently and work hard.

In this rangefinder image, shot at ISO 6400 with hand focus, the Master of Ceremonies and The Management look my way as Tommy James and the Shondells played on the stage behind me.  It's not as exciting to the public but images like this capture the moment for key people and they too make memories that last, along with building goodwill for the photographer . . . .



The final tip I offer is this: Pay attention!  Know what’s happening in the show and anticipate the action with your camera.  Have the lens zoomed, framed, and focused BEFORE the performer starts his solo, so you have the best possible chance of catching a magical moment.  Rather than scanning and hunting for images, follow the musicians with your lens, and let the shots come to you.

Musical Director Michael Jacobson fills in on tambourine
Good luck out there!

John Elder Robison

John Elder Robison is a NY Times bestselling author and photographer.  He's the author/creator of Look Me in the Eye, Be Different, Raising Cubby and thousands of images, articles and stories.  He lives with his wife and family in Western Massachusetts.  Find him online at www.johnrobison.com