Monday, April 27, 2009

The look of autism

I posted this story on my Psychology Today blog, where it generated a number of comments. I've repeated it here . . .

The look of autism . . . what is it, exactly?

I see certain people, and I think, "He' looks Aspergian." Often, if I talk to them, they'll say, "Yes, I have Asperger's too." Exactly what am I seeing?

And I'm not the only one. Many moms with a kid on the spectrum have a very good instinct for spotting other autistic kids. Some psychologists and mental health workers have this ability too.

If I ask other people what it is they see, they often give a convoluted explanation of all the things they observe to justify their conclusions. Yet I doubt what they say . . . I make those judgments in a moment when I see someone, and I've observed many others who do the same. There's no time for all the so-called observation. Somehow, it's a gut level thing.

Those of you who've heard me speak may have gotten some of my ideas on how we do this. I think there are clues in our facial expressions. We Aspergians all remember making wrong expressions at inappropriate times. But wrong for whom? Our expressions seem wrong to observers who don't have autism, and who read some totally wrong negative meaning into our look.

But between Aspergians, are our expressions still wrong? I don't know the answer to that, because I didn't knowingly know any Aspergians as a kid. And now, being older and better trained, I don't make those "inappropriate expressions" very often.

But I still recognize fellow Aspergians, in fact I do so more effectively with every passing day.

So I wonder if those different expressions serve as a subconscious signal to between Aspergians . . . "he's like me." In the past few months I have devoted a lot of thought to this question. I'll be writing about it in Beyond Normal, my next book.

Last week I spoke at the Thompson Center, an autism research facility at the University of Missouri. I met Judy Miles, a geneticist who's studying the same question, but from a different perspective. She said something fascinating to me. "In the 1940s, Kanner wrote about beautiful children with autism." Later readers have taken that as a metaphor, but what if he meant it literally? As she says, there are some kids with profound autism who are also have beautifully sculpted faces. Could there be a connection?

Before you dismiss that idea out of hand, consider that there are facial markers for any number of other differences. Down's syndrome comes to mind as another condition with a distinctive look.

She's using a system from 3DMd that employs four groups of cameras to make a full view of the subject's head, which is then rendered in 3d in the computer for analysis. I've got some research papers on her work, and I can't wait to learn more about it.

My life experience tells me there is a distinct look to "people like me." I can't say if it's in our facial structure, or our expression, or both. I also can't say it's "one look fits all." I get that "he's Aspergian too" feeling often enough, but there are also times when someone approaches me and says, "I have Asperger's," and I don't get any connected feeling at all. But perhaps another Aspergian would say, "he's like me" to that same person.

What's the value of all this, you ask?

Recognition of a look of autism would be one more step in the evolution of society. I often say, knowledge is power, and that's a potentially powerful bit of knowledge. It could certainly help me understand other people, and I'm surely not alone in that.

There are those who will certainly differ with me, saying such recognition could be used to discriminate against autistic people. I can't deny that may happen. But in the end, I think the benefits of greater insight like this triumph over the drawbacks based on misuse.

What are your thoughts?

Saturday, April 18, 2009

The adventure begins

In a little over an hour, I’m off to the Center of the World. I’ll be the keynote speaker for the Seaver Autism Conference at Mount Sinai School of Medicine in New York. Then I fly to St Louis, where I take a bus to Columbia, which is known all over the world as the heart of Missouri, and the Gateway to Kansas City.

I’ve joined the modern world since my last road trip. I’ll be Twittering my adventures over the next few days. I'll have photos of freaks and wondrous scenes, and I’ll share them all with you, unless I am arrested and deprived of my electronics.

These conventioneers had no idea what they were gonna get, when they hired me. But they are about to find out, and thanks to the marvel of modern electronics, you can share in the spectacle.

If you are state of the art, you know what to do. If not, there is still time. Go to www.twitter.com and register for a free account. Then sign up to follow me @johnrobison Hurry . . . my transport arrives in an hour and the half; the descent begins.

I have to go outside now, to speak to the two bears and the woodchuck who will guard my house while I’m gone.

Monday, April 13, 2009

Things that make you cry

Can you remember your first friend? I can. It’s been almost fifty years since we met, and forty-seven years since we last saw each other. His name was Doug. We lived in Philadelphia, Pennsylvania. Our parents were students at the University, and our mothers would meet at the park so we could play.

You will meet Doug yourself, on page 7 of Look Me in the Eye.

I can still remember the playground; the blocks, the sticks and the dirt. That’s what we played with back then – our parents were starving grad students, and we didn’t have any fancy toys.

Doug moved away and I started nursery school. In one of those terrible twists of fate, Doug drowned. I never saw him again.

But I still remembered him, in the fragmentary way I remember anything or anyone from that long ago. I described our friendship in the first pages of my book. I was a bit hesitant, including him in my story. What if my memories were “wrong?” What if his parents read my book, and they were horrified? What if I imagined the whole thing?

I decided to proceed, because my memories are what they are, right or wrong, and my book is basically a sweet tale; one devoid of monsters and villains. Doug was my first friend, and that’s what I had to say. I had no idea who or where his parents were, and there was no one else to ask. With several hundred million people in the country, I had no idea how to find them or even where to look.

A bit over two years have passed since I wrote those pages. In that time, hundreds of thousands of Look Me in the Eyes have been printed and distributed, and word spread.

Today, I heard from Doug’s mother. She said:

I have just finished reading “Look Me in the Eye,” and thoroughly enjoyed it. It had a profound effect on me because I am Doug’s mother. Margaret and I used to arrange to be at the park in Philadelphia at the same time so that our boys could play with each other. Obviously the friendship between Doug and John Elder is something John remembers after all these years. It is by pure happenstance that I became aware of the book. Isn’t life interesting?

When I looked at her note, I felt my eyes fill with tears. Somehow, the voice from so long ago made me cry. I guess I was sad because her note made it all real again, and the knowledge that my first best friend died so long ago still hurts. And I was relieved, because she didn’t think I was a monster for telling the story. I wish Doug were here today. I wonder what he'd say.

Once again, I am reminded that we Aspergians do indeed have deep emotions, whatever we may or may not show. Even now, an hour later, the feeling is still sharp and poignant.

Woof.

Saturday, April 11, 2009

The truth about the Easter Bunny

Egg laying bunnies and chemical weapons – an unlikely combination.

It’s that time again. Kids approach me with shy but inquisitive faces, and they ask, How do Easter bunnies lay eggs?

That is a very good question. The finer details of the answer are shrouded in secrecy, but the gist of the story can be told here.

It all started in the early days of the Cold War, in 1949.

The scene was rural Alabama – home of the Redstone Arsenal. World War Two was over, and the Arsenal was deserted. Five years before, trucks had thundered past at all hours as thousands or determined men worked around the clock to deliver munitions to our troops in Europe and the Pacific.

Now, the men were gone. Everything was quiet. Behind a long metal shed, unmarked drums of chemicals lay, silently corroding under the hot Alabama sun. One day, a drum began to leak. Soon it was joined by another, and another. No one noticed. There were a few military police and caretakers on patrol, but the Arsenal is vast and their numbers were few.

A year went by. Deer bent their heads down to drink the sweet-tasting green water. Squirrels found the blue paste that spread like moss particularly tasty. The area remained quiet. It remained deserted, except for the wildlife. And the wildlife was changing. Some of the deer grew antlers that pointed in strange directions. A squirrel appeared with six legs. And a few of the frogs began eating small dogs.

The biggest change of all happened with the rabbits and the chickens. It started when the rabbits began eyeing the chickens with sick, deranged looks. Scuffles broke out at the edge of the woods. Strange cries rent the night air. Some evenings, the clamor was loud enough to stir the guards in their shack.

You think we got wolves out there? Clem was worried, but Sam and the other MPs reassured him. “No way,” they said. “There’s nothing there but rabbits and snakes and the occasional deer.” Little did they know.

The secret got out when a guard opened the door of a long-abandoned shed, and shined his light inside. A roomful of bunnies sat on nests, guarding eggs. Within a matter of days, they began hatching. They grew bigger, and hopped out into the world.

Meanwhile, the chickens were nowhere to be seen.

It didn’t take long for the mutant Bunnies to hop outside the confines of the Arsenal, and into nearby communities. Rural kids have always kept pet bunnies, so it was only a matter of time before some of the New Bunnies found their way into people’s homes. Luckily, they were friendly.

Kids accepted the egg-laying bunnies without much question. After all, they were kids. What did they know? But a few parents knew a gold mine when they saw one. And that’s how Alabama became – for a few years – the Bunny capital of the world. In a time of progress and change, those Bunnies were heralded as a genuine Hillbilly Marvel. Yes, they were.

Unfortunately, the reign of natural-born egg-laying Bunnies was short-lived. By 1952, industrialists had already begun producing plastic toys. A plastic executive’s son got a Bunny for Easter, and the die was cast yet again.

Toy companies began selling plastic Easter eggs alongside stuffed bunnies, and the market exploded. Millions of kids grew up with them. The Easter Egg hunt became a part of our culture. The result: today’s kids take egg-laying bunnies for granted. The real Bunnies – the freaks that started it all – are largely forgotten.

You can still buy Bunnies at roadside stands in rural Alabama, but few parents venture down there anymore. It’s a disposable economy now. Why buy a real Bunny that needs food, water and care when you can buy a stuffed one and a sack of eggs?

Easter Bunnies aren’t the only mutant rabbits to emerge from our country’s nuclear weapons and chemical warfare programs. Out west, there are Jackalopes. And up North, in some cities, Bunnies have gotten Big. Dressed in leather jackets and armed with billy clubs – they are a formidable force, robbing teenagers to raise money for their friends, the Tooth Fairies. I saw two of those Bunnies last night, in the alley behind Spoleto. They were passing a bottle of Thunderbird – a good cheap wine – and trilling at each other between burps. Luckily, they didn’t see me. I slipped away to tell this tale today.

Tuesday, April 7, 2009

Autism and Art as a window into the mind

This afternoon I had the privilege of speaking at the annual Autism Resources conference for Western Massachusetts. I saw “privilege” because I know how hard it is to organize nonprofit events in this depressed economy. Last years’s conference had two-hundred odd people and to my amazement today’s crowd topped five hundred.

Here’s a link to their site: http://bit.ly/10xbZ1

I spent some time walking around the exhibitor area before my turn to speak. There were many interesting exhibitors, but two art exhibits really caught my eye.

The first exhibitor was a mom with a kid on the spectrum. When I spoke to her at last year’s event I was struck by a certain “look” in her face, and that look and our conversation set me on the road to unraveling the “look of autism” that I’ll be discussing at some length in my next book.
I am sorry to say that I failed to take her picture, so you will just have to imagine for now.

The next person is an artist on the spectrum. She’s 19 years old. Meet Hannah Flavin of Longmeadow, MA, with her mother and her art therapist.



Here are some of her paintings:

Those of you who’ve looked at my photography know I like color, and she does too.










The interesting thing is this . . . Hannah’s speech is impaired, so I can’t ask her to explain the images in spoken words. When I look at the work of a person like Hannah, I can’t help but wonder . . . what ideas is she trying to express? My sense is these images are happy, and vibrant, and alive. But what’s the meaning of the people all tumbled about? What else may be locked away inside the other non verbal autistic people in the world? How can we know?

So much opportunity in American society is tied to your speech center. If you can’t talk, you can’t really score above retarded on most intelligence tests. Why? Because a person with impairment in his speech center – on the left side of the brain - may not hear words as language.
They may only hear them as rhythm and melody, as we hear music. “Hearing music” happens on the other side of the brain.

If a person cannot understand language, there is no way for them to comprehend and obey instructions on an IQ test. The result? A total failure. But does that mean such a person is devoid of brainpower? That’s what people thought 50 years ago, but today we see things a bit differently. A person without speech may still have a remarkable gift for art or music or some other form of understanding and expression that does not involve spoken communication.

Looking at Hannah’s art, it is obvious there is a lot going on inside her head. Yet you could not discover that by conversation. Without art, she’d still be a total mystery, at least to me. That is the magic of this – the way art is a window into the workings of a mind that would otherwise be totally inscrutable and invisible to the rest of us.

When you look at these images, what do you see? I see a world ruled by shades of color. The people, in contrast, are stick figures, insubstantial. It’s as if she perceives a world of shade, shape, and texture. In her pictures people are almost an afterthought.

Perhaps that’s what we are, to 99% of the world’s creatures. Does Hannah see the world in a fundamentally different way, one in which the colors of the world are paramount and humans are insignificant? I don’t know.

Do the colors represent feelings, sounds, smells? Are they the “colors of the world” or are they colors of her moods or even colors of the people in the backgrounds? I don’t know that either.
But perhaps I don’t need to know. Perhaps it’s enough to look and ponder and each make our own choice for what those things represent. That’s part of the magic art – it can mean different things to every viewer.

Any of you who have read Born On a Blue Day by Daniel Tammett may recognize his shapes and colors in Hannah’s art. I too was recently asked if I have synesthesia.

Is that what drives Hannah’s art? Read this description and ask yourself . . .

I have to agree, I have a touch of it, and I’ll bet many of us on the spectrum share that trait.
Temple Grandin has written extensively about thinking in pictures and shapes.

If you’d like to know more about Hannah’s art you can write her at toneflavin@comcast.net

With that, it’s time for me to crawl under my rock. I have a long day tomorrow – I’m speaking at the student center at Worcester State College at 11:30, followed by a dinner for Umass basketball at 6. So I’ll talk to you all later.
And don't forget to check my new Robison Service Blog, at http://robisonservice.blogspot.com/
Also stop by and say hi on Facebook at my regular page and my author page,
Woof!

Friday, April 3, 2009

It's a new dawn - blogs, twitters, and a whole lot more.

Since the collapse of the economy last September, I’ve been spending a lot more time at Robison Service, my automobile business. Over the past two years, I’ve used this forum to offer my thoughts on life as a free range Aspergian and whatever else comes to mind. As a result, I’ve seen this blog develop into something that provides real value to a few people and entertainment to a few more, while making a spectacle of myself the whole time.

So now the world knows me as an Aspergian, but I'm really more than that. Cars came first, starting at age three, as I became windshield wipers whenever my parents took me riding in the rain. I’ve written about cars for a long time; longer than I’ve written about how we think and life with Asperger’s. Is it time to expand that writing ??

As I sit in my little cubicle, whiling away the days, I ponder the meaning of life, meat snacks, and fine machines. I’m hoping I can accomplish something worthwhile by penning some useful thoughts, a few entertaining stories, and the occasional pictures of and about cars and machines. I’ve set up a new blog to do that. It’s called The Robison Service Blog, and it’s now online at http://robisonservice.blogspot.com/

I hope you’ll stop by and leave a comment or two to get things going. I have some stories and pictures, and I’m open to any suggestions you may have for content. So this is your chance . . . tell me what you want by way of machine stories . . . and maybe I will write them.

Woof!

At the same time, I have expanded my Facebook presence with a Robison Service page there, too. You can find it through this link. If you become a fan you’ll get notices when I add new stuff, like events and photo galleries. Here’s a link: http://bit.ly/1WlfPo

At the same time, you might also become a fan of the John Elder Robison author page, where I send notices of readings and talks, and other fun stuff. Here’s a link: http://bit.ly/DpQsa

I’m embarrassed to suggest that anyone sign up as a “fan” because I don't see you as fans. To me, you are all online friends and part of a large community but that’s Facebook’s term, not mine. Whatever you call it, they provided that mechanism to send stuff along and we might as well give it some use.

And that’s not all. Last Sunday, I got set up on Twitter too. You can follow me (as an author or whatever you call me) at @johnrobison and you can follow Robison Service at @robisonservice
This electronic stuff if really taking over, isn’t it?

I’m going to retreat to the 1930s now, to continue work on my forthcoming book on Indian Motocycles. I’ve got a bunch of borrowed research material and I’ve got to hand it back for more next Monday.

Look on my John Elder Robison FB page if you're curious about Indians . . . I posted some shots of the museum we're building to showcase Indian heritage here in Springfield.