Wednesday, January 30, 2013

RAISING CUBBY is coming!

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

Saturday, January 26, 2013

What Have We Done for the Autism Community?

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.

Thursday, January 17, 2013

Can We Outgrow Autism?

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

Wednesday, January 16, 2013

Interagency Autism Coordinating Committee meets on Jan 29

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  ( 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 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

Sunday, January 13, 2013

The Leica, and rangefinder photography in today's world

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