Friday, September 30, 2011

Being Different, in an Australian TV special and a NZ magazine

This afternoon I received a nice review from Thread, a New Zealand news site.  We've had quite a bit of press from Down Under lately, including this one-hour special on Being Different from the ABC, the Australian Broadcast Company.  It aired last week but you can see it now online

Autobiographies by their very nature can be a bit self indulgent, like the book we are reviewing on the life of Steven Tyler. Others choose to use their experiences to illuminate – and make the path of others, easier. Be Different – Adventures of a Free-Range Aspergian by John Elder Robison is just such a book. Having read his previous book Look Me in the Eye (a quip at the difficulty many with Autism have at staring you straight in the face) about his own struggles with his Aspergers/Autism, I can attest to his wonderful open writing style.

He has led a colourful life, from running away from home before he was 18, to designing the pyrotechnic displays known to shoot from the guitars of Rock Gods, KISS, his vintage car business, to his eventual marriage and diagnosis with Aspergers when his own son was diagnosed. This second book, while also autobiographical, is mostly a book full of “practical advice for Aspergians, Misfits, Families & Teachers.” And what great advice it is! Some of it doesn’t translate particularly well to our NZ schools – but on the whole it is a wonderful thing to get a bird's eye view of an Aspergian (his terminology for Aspergers Syndrome – and to my mind a much nicer turn of phrase) mind. With Aspergers a very personal subject for me, and one I know quite a lot about (various family members closely related to me), I am sorry this book wasn’t available earlier. It is a book that can easily be read by parents, family members, and professionals.

I can see it being particularly good for parents of a newly diagnosed child, as it is so very hopeful and positive. It can easily be read by a teen Aspergian, and could definitely make the transition of understanding what makes them tick, and how they fit in the world, so much easier. Five stars. On a personal note – the author is the older brother of Augustin Burroughs who wrote the harrowing tale of his childhood in Running With Scissors. Writing well must run in the family. Be Different – Adventures of a Free Range Aspergian by John Elder Robison is published by Random House and is available now.

A Canadian Aspergian speaks up

Today I have a guest post from a fellow Aspergian in Canada.

I've never ever known what Autism was like. Nor did I suspect that I may be diagnosed with Asperger Syndrom, who according to the DSM, is a mild form of Autism, and part of the Autism Spectrum. To me, Autism was a stigma, something to be ashamed of if you happened to have it, a form of social disability. I remember I was a high school senior in 1991 when Rainman came out, and Dustin Hoffman, who won an Oscar for his excellent portrayal of a Savant individual, seemed to me what "All Autistic People Look Like, Act and Behave".
My name is Steve Norris. But some of you may remember me as "Jim Perry", the name I went by before legally changing it in Ontario. The main reason I changed my name was to distance myself away from the past and turn a new page in my life, as someone who acknowledges and accepts his Asperger Syndrom, and lives with it rather than denying it. I was born in St. Catharines in 1973 to an Irish-Italian family. My father has never accepted me being a kid. He used to hurl insults at me as "stupid", "idiot" and claim that I was "odd", "weird" and "bizarre". My social interactions with my peers were poor since I could remember myself, and I was a target for physical assaults and bullying until I went to high school. Then the bullying stopped but I was still marginalized and ostricized. After my parent's divorce, my father became estranged, wanting nothing to do with the entire family. That's the main reason why I changed my name, so as not to carry his legacy.
In March 2011, I was officially diagnosed as having Asperger Syndrom. Finally I got an explanation as to what was "wrong" with me when it came to social interactions or failed employment opportunities. Drew and the office team were trying to help me out ever since (special thanks to Jay Burford who suspected I had Asperger in the summer of 2010). I gradually started to put my trust in Christ as well as learning what it's like to live with a mild form of Autism.
Recently, after a bitter break up with a fellow Autistic woman, I lost my shelter and clothes in the process as well as my monthly rent. Neurotypical friends and acquaintances I gathered in Toronto due to my volunteer activities garnered clothes for me and gave it to me. They also supported me throughout this tough time and it made me proud to realize that even though there were trying times when I thought I didn't fit, I finally and ultimately came to understand that the church has saved my life, and that I wouldn't be able to make it elsewhere.
 I hope to be able to use my newfound understanding about Autism to promote a better understanding between "mainstream society" ("Neurotypicals"), and the 3% of us who are born with an Autism Spectrum Disorder. I hope to be an activist of promoting rights and accomodations for Disabled people in general, and Autistic ones - in particular.
Steve Norris
25 Tournament Drive
North York, ON  M2P 1K1

Thursday, September 29, 2011

A walk through the casino

I stood in the lobby, taking in the bright sunlight, the sound of falling water, and striking Native American sculptures.  In front of me, the casino entrance beckoned.  Inside, the ceiling lights were muted, allowing the glow of a thousand glowing slot machines to fill the room. As I moved toward the entrance the sounds of gambling drew me in. 

Then I stopped.  Anyone who has ever been in a casino knows it’s a colorful and unique environment.  Yet it’s one of those places cameras are not allowed.  Neither are laptop computers, or any other electronic devices someone might use to beat the system.  There I stood, forbidden items in hand, wondering what to do.

The guards in the doorways are vigilant, and whatever they miss, the eyes in the skies catch.  Most people don’t look up, but I do, and there are casinos where I’ve seen over fifty camera domes around me.  Entranceways are often covered by five, six, and sometimes even more domes. 

The domes are hiding all sorts of cameras looking at us, through us, and maybe even inside.  They run sophisticated facial recognition software to look for those who are blacklisted, and other software looks for suspicious motions and shapes.  The casino is about the most closely watched place an ordinary civilian like me can go.

I’ve passed through quite a few casinos, and I knew they were filled with bright colors and interesting characters.  Even now, I could look inside and see all the things I love in a photo.  But how would I get in? I knew being sneaky would not work; the surveillance is just too good. 

I made a phone call, and got my chance.  A few months before, I’d gotten an invitation to speak at the College of the Menominee Nation, which is an hour west of Green Bay, Wisconsin.  When I flew there, I was surprised to discover the college is right next door to the tribal casino.  In fact, two of my talks were scheduled in the casino’s grand ballroom.  The opportunity was too good to pass up.

As soon as I saw the layout, I made a call to my hosts at the college.  They called the casino manager, who spoke to the security chief.  Just like that, I was in.  And that wasn’t all . . . I was not only in at Menominee, I was also in at the two nearby Oneida casinos.  I could not believe my luck.

The following morning, my hosts walked me from my hotel room into belly of the gambling machine.  Plush carpet and art gave way to hard fluorescent light, linoleum, and serious men in suits.  We met the security chief, signed in, and headed onto the floor.  “Don’t photograph the surveillance cameras,” he said.  That was all. 

These pictures are the result of that visit.

The casino is filled with color, and constant undertone of the slot machines.  I really don’t know how to describe the sound.  It’s not musical yet it’s not noise, either.  It’s more of a robotic background; tinkles, clanks, and the occasional beep or brief snatch of melody.   It’s the sound of a thousand slot machines in action.

No one talks.  The gamblers are serious, focused on their machines.  Most of the players have gray hair, and a surprising number were are.  They sit back, lean forward, draw deeply on cigarettes and play.  Some push a button.  Others pull a lever. 

The days of mechanical slot machines are long gone.  Everything in a modern casino is electronic.  All of it flashes, glows, and sometimes beeps or chirps.  It’s mesmerizing.

In the center of the casino, guarded by rows and rows of slots, you find the games.  There are crap tables, poker, blackjack and roulette.   There the dynamic changes. The players talk, but the language is abbreviated.  “Gimme another,” “stand,” and the patter of the dealer as he rakes the chips and deals the cards.

I saw a few hundred people in the time I walked the floor.  I don’t think one of them smiled.  A few looked angry, but the rest looked serious.  And indeed gambling is a serious business.  Whatever happens, there is always another bet.  The buttons sit there before you, glowing softly, silently taunting you to make a choice.  To lay your money down.

For some, playing the slots is a new and fun experience.  They walk in laughing as they toss ten or twenty dollars into a one-arm bandit.  There’s always the chance for a thousand dollar jackpot, but they generally know better.  When their money is gone, they smile and walk away.

Those are the people who can let it go.  I’ve seen them before, on other days in other casinos.  There were none in evidence on this trip.   The people I saw were not having fun.  They were doing what they needed to do.

I could see how the games become addictive.  I’m glad I was never tempted to gamble. 

You can find more pictures on my Facebook gallery 

Tuesday, September 27, 2011

A Surplus of Males

I spent this Tuesday in Washington, reviewing autism research proposals.  I really enjoy that work, because it puts me among some of the best minds in autism science.   In the course of our discussions, an intriguing question arose.

We know autism is far more common in males, but the reason why remains elusive.  It’s one of those facts of autism that most people take for granted, and simply accept for what it is.  In earlier essays on this blog I have considered possible explanations, from Simon Baron Cohen’s theory that autism is “exaggerated maleness” to reasons why females might be undiagnosed and undetected.

All the explanations I have heard so far do not account for this interesting observation:

If the male/female ratio within a society is 50/50, any random group of families sould have a 50/50 distribution of sons and daughters.  Some families would have one child, others would have three.  Some would have all sons and others two daughters and a son.  Taken together, we would expect the total of sons and daughters to be equal.

If we assemble a collection of families in which there is at least one autistic child, that distribution of sons and daughters is not 50/50.  It favors the males.  Any autism researcher who has worked with families knows that to be true, even in the absence of hard studies to quantify it.  Why?

All of us know families that have all sons or all daughters.  We don’t make anything more of that that we do tossing a coin and having it come up heads three times in a row.  Just chance, we say.  But when you identify a group of families with a trait like autism, and they all have more sons than daughters . . . suddenly it stops looking random and starts to seem the result of something else. 

If this were a roll of the dice, you’d start to think the dice were loaded.

One explanation is that some parents have a son with autism and stop having children.  So the girls that might even the male/female ratio are never born.  I think that explanation may be true today, but what about the ages before modern birth control? 

Critics might say that we don’t know how autism was distributed among the sexes a hundred years ago, and that’s true.  The autism diagnosis has only existed for sixty-some years.  Yet we do have strong anecdotal evidence.  Using that, some modern day people have “diagnosed” historical figures with autism based on what we know of them and their lives.  How many of those individuals are female?  Almost none.

Those “post-mortem diagnoses” are certainly subject to challenge and I’m sure some are even wrong.  That said, they can’t all be wrong and the male-female ratio in the known historical record of autism remains strikingly tilted toward the male side. 

Geri Dawson suggested another possible explanation for the male-female imbalance.  What if girl embryos are actually more susceptible to some factor implicated in autism, but in a different way?  The factor that produces autistic baby boys might result in unsuccessful pregnancies when the fetus is female.  The result – fewer baby girls with autism are born.

To the best of my knowledge, no one has studied pregnancies in families with autism.  All that has been studied are the resultant children.  We don’t know how many miscarriages may have preceded or followed the birth of an autistic boy.  The incidence of miscarriage in general has been studied and it would be interesting to know if families with autism deviate from the norms in that regard.

The son-daughter imbalance certainly ties in with the Baron-Cohen “maleness” theory.  If autism indeed an expression of excessively male genetic material, that imbalance might result in more males being born in those families.

I spoke to several scientists and it became clear that this is one of those obvious questions that has never really been answered.  There is the general belief that autism families contain more males, but we have no hard data to illustrate the difference.  We also don’t have any multi generational data, which could shed light on the heritability of the condition.

In my own family, I have one child, a son with Asperger’s.  My father had many Aspergian traits, but he died before anyone thought to explore that possibility.  He had a brother, and no sisters.   His father also had a brother and no sisters.  His grandfather had three brothers and a sister.  Is there a pattern there that relates to autism?  I really don’t know.

It would be very interesting to see a study that addressed this question.  Perhaps a grad student somewhere will read this, and bring a research proposal to our next review meeting . . . .

Stranger things have happened.

Wednesday, September 21, 2011

Images of the Big E, New England's Carnival

Here are a few images from this year's fair.  I love photographing carnivals.  There's a certain magic to them.  I hope you enjoy the images.

For the camera enthusiasts among you these were taken with a Nikon D3S and 80-200 or 50mm lenses

Tuesday, September 6, 2011

Greetings from Western Australia

I'm writing you today from Breaks, an Internet cafe in Freemantle, Western Australia.  My Internet went down a few days ago in Melbourne and I've been offline for the past few days.  It's exhausting traveling this far to speak, but the people are wonderful and the scenery is striking.  This is the Indian Ocean, rolling ashore at Freemantle.  It's open sea from here to South Africa

It's much easier to visit the ports here than in America.  Here's a BigLift's heavy lift ship heavy lift ship Happy Delta tied up at the container terminal.  She is brand new, as of January 2011, and can lift 800 tons between the two deck cranes.  Standard container ships, in comparison, are limited at cargos of about 40 tons per container.

As the container crews work fisherman gaze out to sea and wait for the big one to bite.

There was a Wallenius car carrier ties to the dock behind the fishermen.

In this image you see APL RIYADH, an 850-foot container ship operated by American President Lines.  She's also a new ship, built in 2010 with the capacity to carry some 4,300 shipping containers.  She's powered by a single MAN diesel engine developing 50,000 horsepower.  That's equivalent to a dozen heavy freight locomotives, but she carries vastly more cargo than those same locomotives could pull.  That's why ocean transport is so efficient, and so inexpensive for the tons and miles moved.

In this image you can see two slightly smaller Malaysian container ships offloading cargo.  Even a small port like this can move a great deal of traffic with container handling and ship-to-rail and ship-to-truck facilities.

In this final shot synthetic dock lines dry in the sun

I will be speaking at the University of Western Australia in Perth this evening.  Tomorrow, I am off to Brisbane and the Writer's Festival there.  I'm looking forward to meeting more of my Australian friends in person.