Sunday, August 23, 2015

A Journey through the Adirondacks and Northern New York

This weekend I had the honor of being the convocation speaker at the opening of Clarkson University's 2015-16 academic year.  I drove there on Saturday.  If you plan a similar trip I advise bringing a powerful car, extra fuel, survival gear and defensive weaponry.

The road to Potsdam runs through the heart of New York’s Adirondack forest, which has become a place of ruins.  The Adirondacks were once the playground where all New Yorkers went to vacation. The camps were filled with kids and parents, and the resorts were booming with couples and groups of all sorts.  Not any more.

That said, with the humans subtracted it remains a place of wild and rugged beauty.  It's home to some of the northernmost rattlesnake dens in North America.  






Nowadays, though, it's largely forgotten as New Yorkers go to Aspen – or even farther - and the opportunities closer to home are abandoned.  First the resorts closed, and the great complexes like Grossinger’s were reclaimed by the woods.  The campgrounds were closer to woods to begin with and they disappeared even faster.

Then went the people who served them.  Whole communities depended on the tourist trade, and as it dried up, so went the means of support.  Anyone who could moved away.  Realtors put signs on the properties that were paid for, but there were not too many buyers.  Banks foreclosed the properties that had debt, and they had even less luck with remarketing.






Some of the houses people abandoned were pretty grand.  You wonder who they were, why they left, and where they went . . .



Today you drive wooded country roads, seemingly devoid of houses.  But when you look close, you see they are in there, surrounded by trees.  Some standing, others fallen down.  It is impressive, how quickly nature reclaims its own.




Then there are the roads themselves – the ones with pavement last longer.  Dirt roads can vanish as fast as the camps they led to.  Can you see the road in here?




It should come as no surprise that abandonment has even touched the road maintenance, and infrastructure like dams and bridges . . . And the 2011 hurricane and flooding did its part, too . . .



You need to be careful up north.  Infrastructure has gone to seed, and what looked at a distance like a friendly gas station is now abandoned broken by man, and it's home to wolves and were-bears.  God help you if you step too close to those doors late at night.  A fellow across the street says the flag hangs there as bait, and I saw for myself how true that was.  The screaming was unearthly.


There are places up there that make books like The Shining seem like kiddie stories.  And you don't hear much about them because those who learn the truth never emerge.  Your best advice - enter the country with a full tank of gas and a shotgun. Don't step out of the vehicle at night.  


When you see those heavy grates welded over storm drains . . . that is not to keep you out.  It's to keep THEM in.

Then, as you get father north, you come into farm country.  Abandonment there too a different form.  Half the farmers left, and abandoned or sold their holdings.  The houses and many of the barns were left to their fate, and the land was worked by those who remained. 


Closer to New York city these abandoned houses would be filled with the homeless, and with crack dealers.  Up here, they are just empty.  Mostly.  And the ones that are not . . . you will surely wish they were if you make the mistake of walking inside.





In the northern towns there is a pattern of struggle, then abandonment.  The working men and women who once populated this part of New York are leaving, to be replaced by transient college students at Clarkson, SUNY Potsdam, St Lawrence and a few other schools.  Health care is big up here too, thanks to an older core population and rising health care costs. 

Places like the 3 Bears Gluten Free Bakery are thriving, but you know times are tough when the tavern next door goes bust.



And for the rest . . .




In some places abandoned storefronts would signal crime and danger.  Here the people are mostly gone.  Yet they still manage to leave their mark . . .

The strong smell of urine is the first thing that hits you as you approach then Potsdam Court.  Then you see where the odor is concentrated – the collection box.  Clearly the people of northern New York have brought more than money to show their regard for the state court.



Then there is whimsy.  A block up from the court, the Patron Saint of the Bathroom stands before his legions.


Potsdam is actually known far and wide for having a whole house lot devoted to the Art of the Urinal






Most people don't think of New York as rural, but this is some of the most rural and wild country in the Eastern United States.  And it's empty.  You know it's remote when the accoutrements of modern highways slip away.  First the road widens a bit, and there are no guard rails.  Then there are no houses.  Finally there are no telephone poles.  And of course there are no other cars.  Run off the road up there and you'll be waiting a long time for rescue.

I left Clarkson in Potsdam and headed home Sunday night about 9.  Once I cleared Potsdam, it was 150 miles through the mountains to the honky-tonk of Lake George.  In that whole distance I passed 16 moving cars.  Think about that.  Can you imagine driving from Boston to New Haven and seeng less than 20 other motorists?  It gives pause for thought . . .

Until next time . . . 

All words and images (c) 2015 John Elder Robison

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's served 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.


Tuesday, August 18, 2015

Neurotribes - Steve Silberman's new book on the history of autism

Steve Silberman’s book Neurotribes is a must-read that raises some interesting questions about the history of the autism diagnosis.  Part of what he writes will be familiar if you’ve read the original Asperger and Kanner papers, but even then he’s found some striking new twists that were buried in the archives, and they are sure to stimulate good discussion.



Last month I had the opportunity to read an advance copy, and this week reviews of his book appeared in the NY Times and Atlantic.  The Atlantic article in particular touched on what I felt was a key part of the story Steve uncovered and I’d like to expand a bit on it here . . .

I’ve always been curious about the striking coincidence in how autism made its debut in the medical literature.  In 1943, Dr. Leo Kanner published a paper in America in that described a previously-unrecognized condition he called “autistic disturbances.”  A year later, in 1944, Dr. Hans Asperger published a paper in German that described the same thing – autistic behavior.  How did two clinicians an ocean apart come to recognize the same previously-unseen condition, and quantify it using many of the same terms?

This mystery was deepened by the fact that Kanner seldom made any reference to Asperger or his work, and there was no known collaboration between the two men.  Or so it appeared.

In the recent Atlantic article, Silberman describes finding the hidden connection between Asperger and Kanner. It turns out to be a third man, Dr. George Frankl.  In the 1930s Frankl was Asperger’s diagnostician at his clinic in Vienna.  Frankl was there for all the diagnoses described in Asperger’s later paper, but he left Austria when the persecution of Jews began.

By 1938, thanks to Kanner’s sponsorship, Frankl had found a new home at Kanner’s clinic at Hopkins, where he examined Donald Triplett – now celebrated as “autism case #1.”  Interestingly, when you read the accounts Kanner published about Triplett there is very little first-person language.  As far as I know, no one has considered the reasons for that until now.  What if Kanner wrote in the third person because Frankl did the actual evaluation?

Maybe we’ve been barking up the wrong tree all these years, debating whether Kanner or Asperger should rightly be the “father of autism.”  Maybe the real father – if there is such a thing – is Dr. George Frankl and Kanner and Asperger were both bosses who facilitated things and took the credit for their subordinate’s work.

Silberman does not suggest that, and I concede it’s just a guess.  But the scenario is all too familiar to postdocs and grad students of today!

To quote the Atlantic article:
It is clear now that Kanner and Asperger’s discoveries were neither independent nor simultaneous.

That’s not all . . . One tragedy that Silberman describes at length is how Asperger – in his original writings – described family clusters, regression, and the full breadth of exceptionality and disability that makes up the autism spectrum as we know it today.  Yet the descriptions were not translated from the German for 40 years, and even then they were not widely circulated, so the true breadth of autism remained unrecognized until its rediscovery in the past decade.

The result – countless people at the more verbal end of the spectrum – like me, my son, and his mother – were overlooked and written off as lazy or stupid, when in fact we could have received life-changing interventions and understanding if Dr. Asperger’s insights had been widely known.

In another review of Silberman’s book a writer asked where the 50 and 60 year old autistic adults are.  Putting aside the fact that I am one, and I am highly visible, Silberman talks about that question in his narrative. Dr. Asperger seemed to believe his charges belonged in the community, while Dr. Kanner seemed to believe they belonged away from the parents in institutions.

I say “seemed to” because that is the impression I formed from reading the original words of both men, and it seems like Steve Silberman drew a similar conclusion.

That said, I did not need a book to find older adults with more severe autistic disability.  Dr. Kanner referred many patients to the Deveraux group homes, and I have had the privilege of meeting some of them in modern times as I’ve spoken at Devereaux events and facilities. 

I’ve written before about the sensitivity and compassion I saw extended toward older Jewish adults with major cognitive challenges at the Brooklyn Women’s League homes.   I was very moved by the environment I saw there.  If you are looking for a model for compassionate care and inclusion for people with cognitive challenges (autism and more) look no further than Brooklyn.  And know there are other places like that around the USA.

I can’t imagine anyone could visit facilities like those and wonder where the more challenged adults reside.  They are everywhere, if you know where to look.  And people at my end of the spectrum are everywhere too.  We're every bit as common as Dr. Asperger suspected, and every bit as diverse.    

Later in the book, Steve writes about the emergence of the neurodiversity concept, and the reality that the autistic children of the past have grown up and begin asserting their (our) rights. Autism advocacy started as a parent's crusade on behalf of disabled children, but it's morphing to a movement where autistic adults push for acceptance and accommodation in addition to assistance and services.  We are finally recognizing that the autism spectrum encompasses more than the most severely impacted people that were diagnosed in the 1980s.  

You'd think the puzzle would look simpler but these insights make it even more complex, from my perspective.  


Neurotribes is a book that will make you rethink your views of this autism spectrum and how it all came to be.  Give it a read.

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's served 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.