Friday, April 25, 2008

The incident with the gun, my brother, our father, and me

In my brother’s new book, A Wolf at the Table, there’s a scene where we have a family fight, and my brother runs into my room. He grabs my gun, hands it to me, and says, “Kill him!”

When a reporter asked me about that scene, I said: It wasn’t as big a deal to me as it was to my brother. I’m eight years older, so my perspective is a lot different. And it was, after all, only a BB gun.

To my enormous distress, people have seized bits of that statement and used it to suggest that the scene, or even the whole book, is exaggerated and made up. It’s not. My brother, my mother, and I all agree on the essential truth of the book. We certainly agree that my father was frighteningly mean when he was drunk. And in those years, he was drunk every night, whenever he was home.

The only time he was sober was when he was at school, so his colleagues and students saw a totally different side of him. Luckily, I too saw that side of him later in life, after he stopped drinking.

The fact that my little brother – a small child at the time – felt the need to grab a gun to defend us says a lot about how life was at that time.

Fights with drunks can get ugly.

The fact that it was a BB gun is irrelevant to the true emotional tale my brother relates: I was holding our father at gunpoint. The fact is, my brother was terrified and thought that was the defense of last resort. So he got it, and gave it to me, because he believed I was his defender. And it worked. Our father went downstairs and things simmered down.

My brother also writes that I warned my father, “I keep the rifle loaded,” which I did. How many of you were proud teenagers with BB guns and air rifles? How many kept them loaded, in case a grizzly bear came through the door? How many of you can remember feeling like that?

As much as I am troubled by the scary stories from my youth, I feel I should share the story of why it was “only” a BB gun. And why we did not have a “real gun” in the house.

I wrote in Look Me in the Eye about how I grew up around guns. Down at my grandparents in Georgia, most every farmer or landowner had guns. Mine were no exception. When we moved to Massachusetts, my grandfather sent my father a gun, too. He sent him a WWII surplus Springfield bolt action rifle. Luckily, he didn’t send shells.

The gun arrived about the time my brother turned three. My father fell into a black depression, and talked of suicide. I wrote about some of those incidents in Look Me in the Eye. Here’s one that didn’t make the book:

My father would get drunk, and sit the gun on the floor, aimed at the ceiling. He’d be in his chair, at the kitchen table, with the old black and white TV in the corner. He’d drink his sherry, rest his head on the end of the barrel, and cock the gun and pull the trigger. Time after time after time. Yesterday, our mother told me she remembered going to sleep to the click of the empty gun. Frightened, she gave it to a friend for safekeeping. I have it today.

So there you have it. That’s the reason there was only a BB gun in our house.

There are a number of other inaccuracies that are being reported. One reporter said, [A Wolf at the Table] claims Robison put a cigarette out on Burroughs' forehead. That’s wrong. That is in my book, in a chapter called The Nightmare Years, and also in my brother's 2003 memoir Dry.

When I wrote that, my mother read it and said, I don’t remember that happening, but I just don’t know . . .

My first wife read it and said, Oh my, when you were seventeen years old you showed me a mark on your chest where he’d burned you with a cigarette. Don’t you remember? It was on you! Thirty some years later, spot has vanished and the memory has faded. So the evidence suggests that both my brother and I may have had cigarettes mashed out on us, and we've repressed the memories. Obviously people can have different and even contradictory memories of bad things. That’s how memory works. Saying we're in disagreement about those points is simply untrue.

After reading this story, I hope you will re-read the epilogue to Look Me in the Eye, where I made peace with my father at the end of his life. Because that’s how I want to remember him today. People do change, and the last half of my father’s life – after we’d left home and he was remarried - shows that.

In closing, let me just affirm I am very disturbed to see my words taken out of context and used to fan the flames of controversy when in fact there is no controversy. My brother and I don’t have any dispute about the content of our books. Augusten and I may interpret the meaning of childhood experiences differently, but we do not disagree about the underlying events themselves. And those are the facts.

Here's a link to order my brother's book:

Tuesday, April 22, 2008

No words, but some scenes from Boston this spring afternoon

Train tracks

Street art

Reflection in a Jetta

Approaching streetcar

Thursday, April 17, 2008

Standing on the brink

On more than one occasion, I’ve had people ask me, “If you could take a pill and get rid of your Asperger’s, would you do it?” I’ve always said, “No! I’m proud to be Aspergian and I wouldn’t change it for anything.”

Asperger’s is an essential part of who I am. In fact, its how my brain is wired. My brain’s unusual wiring manifests itself in many ways. I say unexpected things. I have weird mannerisms. I come to surprising conclusions when solving problems. To most people, my mind just works in strange ways. When I was younger, that troubled me to no end.

I always knew I could take pills to change the way I act. But my Aspergian impulses are pretty powerful, so I’d need a powerful pill to hammer them into submission. And I shudder to think of the side effects. I still remember seeing my parents in the state hospital, slowly wandering, mindless, and tranquilized into submission. The orderlies even had a name for it. They called it, “doing the Thorazine shuffle.”

Today’s brain pills may not have such dramatic side effects, but the complaints of sexual dysfunction, dry mouth, weight gain, or insomnia are well documented. Pills go in our mouths, dissolve, and affect the whole body. Pills aren’t intelligent. They can’t pick the one part of the brain that’s troubled and fix it. Body-wide dispersion is okay for fighting infection, or lowering fever. But it’s not okay for a pill that affects the working of the mind, at least, not for me.

But I’ve always wondered, What if there was an alternative to pills? If I could pick a part of my mind and change it and make it better, would I do it?

Until now, such questions were merely fantasies. No more. Right now, neuroscientists are working to make that dream a reality. In fact, one of the leading teams is right near me, at Beth Israel Deaconess Medical Center – a part of Harvard Medical School.

A group of researchers led by Dr. Alvaro Pascual-Leone is using focused magnetic fields to deliver energy to small parts of the brain without surgery. This energy can enhance or inhibit the functioning of specific areas of our brains, allowing treatment of small parts of the brain without affecting the whole. This technique is so precise that regions as small as 1 percent of the brain’s total volume can be treated. The process is called Transcranial Magnetic Stimulation, or TMS.

The TMS energy is delivered by electromagnets held alongside the head. It’s clean, noninvasive and painless. The TMS energy causes the brain to form new connections and pathways. It provides the “push” to make the brain change. The brain changes in subtle ways throughout life, but TMS can accelerate and shape that change in a beneficial way.

I was immediately attracted to and comfortable with the idea of TMS, because it uses processes I knew from my time in electronics. When I worked at Candela Laser, we designed high-energy power supplies that were essentially the same as those used in TMS. And I used powerful electromagnets in both audio and laser work. When I began talking about this, some of my friends said, “Aren’t you scared having those magnets by your head?” I’m not scared, because the systems I used before were far more powerful than these. Admittedly, they were not focused into my head, but we engineers have a long history of co-existing with magnetic fields without ill effect.

In addition to my own experimentation, Dr. Pascual-Leone and others have done extensive research to validate the safety of magnetic therapy. It’s also been extensively researched in the context of MRI machines, which generate even more powerful magnetic fields.

All my life, I have worked hard to train and develop my brain. I’ve had good success teaching my strong parts, like logical reasoning, to take the place of weak parts, like social empathy. That has made my life far better, but it has limits. Now, TMS offers the possibility of removing some of those limits by targeting specific roadblocks within my mind, and enhancing or removing them.

The possibilities of TMS are staggering. Right now, the technology is helping restore brain function in stroke survivors. It’s helping chronically depressed people return to happy lives. A Google search reveals many articles and papers on the successful use of TMS in these areas.

The process has been fine tuned over the past twenty years, and it’s now a mainstream therapy for certain conditions in Europe. Based upon that success, Dr. Pascual-Leone’s team has set their sights on using TMS to help the autistic mind here in Boston.

I have decided to join Dr. Pascual-Leone’s team to assist in conducting and shaping this research. We both hope my Aspergian mind will provide insights to move the work ahead. I’ll be in an unusual position, since I’ll be an experimental subject who is at the same time involved in formulating the experiments. And throughout the process, I’ll be writing and telling the story to the wider world.

And so far, my own results look very promising. TMS did not effect any permanent change in me, but it opened my mind and gave a glimpse of what's inside. Remarkable, to say the least.

The prospect is both exciting and scary. It’s exciting because TMS may help my mind develop new abilities, and it may allow me to accomplish things I could not even have dreamt of before. But it’s scary for the same reason . . . I may change in unexpected and even unwanted ways. What if I don’t like the result?

But it’s irresistible too, because the process of shaping and delivering powerful pulses has always fascinated me. In fact, it was one of the things I specialized in when I worked in electronics. The similarities between the equipment in their lab and devices I’d worked with were immediately obvious to me.

As a child, I read a book called Flowers for Algernon. It’s the story of a team of scientists who find a way to make people smarter. As a test subject, they choose a mildly retarded janitor. And he becomes a genius, but it doesn’t last. After a little while, his intelligence fades before his eyes.

Will I suffer the same fate? I sure hope not, and my logical mind tells me such a possibility is extremely small. As always, I prefer to focus on the opportunities life offers. And I’ve got an ace in the hole . . . TMS is not permanent unless it’s reinforced by repeated treatment. Otherwise, the effects of TMS fade with time. That means we pay close attention to our results, and reinforce the beneficial ones while abandoning those that don’t work out.

All my life, I’ve been blind to social cues, facial expressions, and body language that others read instinctively. I can’t look someone in the eyes and know how they feel. Those parts of my brain just don’t work. You might say, those circuits aren’t hooked up.

What if TMS could help my brain make those connections? What would it mean to me, at age fifty? How could I know? It’s like asking a blind person what it might be like to see. Wiring differences like that create big problems for thousands, even millions, of people. What if we could address those problems without changing the essence of who we are?

What if we could remove the anger from a person who suffers from uncontrollable rages? We can do it today, with heavy tranquilizers. Can you imagine using TMS to do it without medication, leaving the essential person unchanged? Existing tools – heavy medication, electroconvulsive therapy, or lobotomy, are like sledgehammers in the mind. Suddenly, there’s the prospect of tiny tweezers to pick out microscopic slivers instead.

The most exciting possibility is that of extending this therapy to more profoundly autistic people. What if we could offer a non verbal person the power of speech? Today that’s a dream, but it may become a reality through techniques pioneered in the Beth Israel Deaconess labs.

Some people read about TMS and the phrase “a cure for autism” comes to mind. I’m aware such talk generates tremendous controversy. Dr. Pascual-Leone is quick to say TMS does not “cure” autism, but that does not stop the gut reaction many people feel. On the one side, we have parents desperate to “fix” their kids. On the other, we have grownups on the spectrum, who say, “We don't want to be fixed, and we have the right to live our lives in peace.” That’s what I’ve always said too, while faced with existing sledgehammer treatment options. Now, with the possibility of gradual growth and change through a process that’s the mental equivalent of physical therapy, I have to rethink that position.

The idea that I can change and hopefully improve my brain in a gentle, progressive, and reversible way is just fascinating, and irresistible. TMS could offer the ability to make our brains work better. I invite you to accompany me on this journey, as we learn some of the implications of fine-tuning the mind. I look forward to sharing the story of our research as we move ahead.

For additional reading:

The lab’s official site

Old brain, new tricks New research on the blind is revealing the brain's ability to adapt - and may lead to new therapies for everything from strokes to chronic pain
Published in the Boston Globe, January 15, 2006

Published in the Boston Globe, January 14, 2003

Magnetic Pulse Seen as Boon for Brain Research
Morning Edition, NPR, January 25, 2007

Stroke Treatments
New Scientist, June 22, 2002

And here are some videos from the Ted site: brain segmentations and control a doctor studies her stroke brain control

Thursday, April 10, 2008

A visit to Beth Israel Deaconess Medical Center

I know that many of my readers are in big cities with access to state of the art medical facilities. You readers may want to skip this post, because you see Famous Medical Centers around every corner. You take places like BIDMC for granted; just another example of Your Health Care Dollars at Work. For country bumpkins like me, though, it’s an experience to be savored. A trip to the big city. Boston.

BIDMC is in the middle of a huge medical-industrial complex on Brookline Avenue. The whole thing - hospital buildings, parking garages, and a small park - is part of the Harvard Medical School. It’s almost like a Mall of America for medicine. With some trepidation, I drove to the end of the street, and turned into the entrance. That’s where I encountered my first test.

I knew that behavioral psychologists did their experiments inside, but I did not realize they’d had a hand in the design of the building. It hit me as I sat in the entrance to the parking structure, looking forward into the roof. I was stuck. The diabolically designed curbs and curves prevented a reverse-gear escape. And the entrance ahead was an inch lower than the roof of my car. Cars were lining up behind me and the pressure was on. Resigned, I pressed the button and lowered my Range Rover to its lowest position, and then pushed the button three more times for effect.

At the lowest possible speed, I crawled the Rover into the structure.

I opened the sunroof, and reached my hand up to feel the passing of each concrete support, a scant two inches above my car. The satellite antenna is two inches tall, too, I thought. As I penetrated the building, I noted the total absence of vehicles like mine, and I remembered the advertisements for public transportation on the street. Luckily, I found a space to park.

Ducking my head, I walked out of the garage and into the crowded lobby. Scanning the people, I was struck by their overall appearance of health, or at least the non-appearance of visible disease and decay. They must market this place to an upscale crowd, I thought. Or else this lobby is where the fixed specimens hang out.

A receptionist gave me directions to the Brain Study area, and I headed up the stairs and into a corridor. I must have walked half a mile, and everyone I passed looked ambulatory and healthy. Impressive, I thought.

Finally, I reached my destination. The Center for Non Invasive Brain Stimulation. I opened the door and went inside. It was a quiet but impressive place, led by Dr. Alvaro Pascual-Leone. You could almost smell the intelligence in the air. Sort of perfume-like, with a hint of ear-smoke. The walls were lined with magazine articles describing the work they’d done, and the patents they’d been awarded. Some places would have put that stuff up with thumb tacks, but these folks have class. They used frames.

Looking around some more, I was reassured by the absence of operating room equipment, large knives, or saws. Sharp-edged power tools in the hands of medical people have always worried me.

Two post doctoral fellows (though Lindsay and Shirley are not fellows at all) rounded me up and herded me into a room for some “testing.” I wasn’t sure what they had in mind, but I went along. They sat me down at a computer, which proceeded to ask me questions. For each question, I had to push one button if the question made sense and another if it did not.

At first, the questions seemed obvious. I don’t want to give up their secrets, so I will show what they did with my own sample questions:

“Eat the cake.” Makes sense.

“Drink the highway” Nonsense.

But after a few minutes, I began to wonder . . . Did the questioners do acid? Maybe they did drink highways. I remembered my experiences with mushrooms, and suddenly the questions seemed a lot more ambiguous. And shrinks often ask weird questions.

“Choke me.” OK, makes sense. I’ll choke you if you want.

“Throw me out the window.” I paused for a second. How far can I go with these answers before they sneak up behind me with restraints?

Finally the questions came to an end. I was sure there was some deep purpose, and I hoped I passed. It was, after all, a long ride in the car followed by a tense encounter with a parking structure.

The next stop was the TMS machine, which is one of the main things they experiment with out there. I sat in a chair with electrodes attached to my fingers, while they fired bolts of magnetism into my head. And that was the strangest thing. I could hear each pulse, and I could feel a twitch in my head. But at 25% power, nothing at all showed in the fingertip electrodes. At 40%, there was still nothing. We went up slowly. 41%, then 42%. All of a sudden, a blip appeared from my fingers. 43%, and my fingers jumped like frog legs off a dinner plate.

It was very curious. During a break, I called a friend, who said, “Great! Now you can re-magnetize the strip on my credit card.” I know that I sometimes insult people whose technical knowledge is less than mine by pointing out their ignorance, so I said nothing.

And that is just the tip of the iceberg, or brainberg, as it were. Neuroscientists are now using cutting-edge technology to reach deep into the hidden recesses of the mind, to measure and even change our very thought processes. I’ll be writing a lot more about this in the future, so stay tuned . . .

It sounds strange, but these folks have achieved remarkable results using magnetic energy to help stroke survivors, people with depression, and people with other strange neurological conditions. Now, they’ve set their sights on autism.

After reading about their work, and talking to them, I decided to join their effort. And that’s what started me on the journey to the experimental parking garage.

With that, we headed over to the MRI center, where we made 168 images of my brain. Afterward, the technician provided me with a viewer. Later, when I showed it to my son, he animated it, and I now have a dancing brain. On Youtube.

And after all that, I headed home. I’ll return next week. Check back for more on the TMS program. For those who can’t wait, here’s the lab’s official site

Sunday, April 6, 2008

It's a train kind of day in the blogosphere

I know it's national autism month and I should be full of insightful stories. And maybe I am. If you want to find out, come see me in Wallingford this Thursday at 6. Meanwhile, today's blog is devoted to trains . . . No one knows why so many Aspergian love trains, but there it is . . .

If you want to run a train west from Boston to Albany, there are two routes. The southern route is the oldest, being built in the 1840s. That line was the Boston & Albany, then the B&M, then Conrail. Now, it's CSX.

The line is all in good condition, with modern heavy welded rail. Welded rail means that there are no joints, so the trains roll silently and smoothly. Here's a CSX freight climbing the grade at Middlefield, MA:

Everything about the CSX mainline in this area is nice. The track is new and well maintained. The ballast is good, and it's properly graded. It's smooth and fast.

You can see they're running modern AC traction locomotives, three of them, and they're pulling 100 cars up the grade at a good clip. You might also notice they're climbing (going west) in the eastbound lane. That's because (when this was taken) there was another westbound train broken down a few miles back, blocking the westbound track.

The current CSX main line was laid out about 1910. It runs close to the original line, which dates from 1843. The original line was distinguished by it's stonework. The line runs on beautiful stone embankment through the Middlefield cut, and the line crossed the Westfield River on a series of stone arch bridges. Here's one:

These bridges stand today much as they did 165 years ago. They've withstood trains, floods, and weather. The amazing thing is that they are made of 100% cut stone. There's no metal framing, no mortar, and no cement. They are held together by their own mass, shaped by the stonecutters.

Here's a summertime view of the underside of one of the other bridges on this section of line:

The washout that's visible in the lower left corner dates from the 1880s, when a mill dam burst and caused extensive flooding in this section of river. Luckily, it was very rural and there was no loss of life. Two of these massive stone structures, though, were actually washed out and this one suffered damage.

The northern route is a little less state of the art. It's interesting, though, because it goes through the Hoosac Tunnel. The tunnel takes the Springfield Terminal line from Rowe to North Adams through 5 miles of mountain. In this photo you can see two intrepid rail fans gazing into the entrance to the tunnel. You can see a haze that's a combination of diesel exhaust fumes and steam wafting from the tunnel entrance

As you can see, even in April, it's still winter in the Berkshires. The Hoosac tunnel was an engineering marvel back in its day (1877) for a number of reasons, one being that it was the first time nitroglycerin was used in large scale construction instead of blasting powder. There's a cemetery about 1/2 a mile down the tracks for all the nameless workers who died building the tunnel.

The line crosses the Deerfield River right before the tunnel. Here's a shot of the underside of the bridge:

The steel is all wet and rusty, and covered in a slime made from moss, algae, and dripped lubricating oil. Needless to say, I did not venture out onto it. The green water below is about 36 degrees, and moving fast. The next shot shows the main and passing tracks just east of the bridge and tunnel portal:

In the first photo, you saw the nice modern CSX lines. The ST line is quite a bit more run down. In this show, you can see wavy rail, and rotted ties. Some of the track up there is quite old. This section, for example, dates from 1934. You can read the makers mark on the side of the rail. It's actually a testament to the quality of the steel that it's this clean after 74 years outside:

This shot shows the old way of joining rail, with bolts and plates. You can see a few bolts are missing, and the rail has separated enough that there's a flat spot where the two pieces join. Those joints are what made the traditional clakity-clack sound of a train.

Friday, April 4, 2008

Some Asperger questions from the audience

The questions below came from a teenager with Asperger’s at Lower Pioneer Valley Educational Collaborative. She gave me a paper with these questions after I spoke to the students this past Monday. The questions were interesting enough that I decided to share them here:

Did you teach yourself social skills or did you have help along the way?

First, I learned social skills from my family. My mother and my grandmother taught me how to get dressed, how to hold a knife and fork, how to say please and thank you, and how to behave. None of that teaching had anything to do with Asperger’s – most any kid should and indeed must learn those things.

It was actually those basic skills that allowed me to go out and become self sufficient. If you learn anything at all as a kid . . . learn basic manners and behavior! You can get a job without math skill. You can even get work if you can’t read. But you can’t get any kind of job without the basic skills of manners and behavior.

These basic skills are really important for all of us.

Later on, when I learned about Asperger’s, I made a concerted effort to teach myself the kind of skills I lack because I’m Aspergian. I did this through reading, study of other people, and I did it with the assistance of my observant neurotypical friends.

What do you think people without Asperger’s can learn from us?

Have you heard the expression, “not seeing the forest for the trees?” Smart people without Asperger’s tend to see whole forests. They are very good at seeing “big pictures,” and imagining such concepts.

People with Asperger’s, on the other hand, are often “tree people.” We often have an extraordinary ability to focus in, By focusing all our intelligence to such a sharp point, we often make the technical breakthroughs that drive our world forward in science and technology and other fields.

I hope the above explanation helps show the difference in our two minds, and why human society needs both – working together – to achieve maximum success.

If there were ever a cure would you take it, or would you think it was like taking a piece away?

At age 50, I am comfortable the way I am and I would not want to take any pieces away. As a teenager, though, life was a lot harder and I’d have had a different answer if you asked me this at age 15. I guess we become more comfortable with ourselves as we get older and hopefully wiser.

I have Asperger’s and so do some of my friends. We are each good at different things. What kind of things do you specialize in besides electronics?

I love photography, motorcycles, cars, boats, ships, trains, and other specialized machinery. I like technical puzzles of all sorts. I like any technical challenge.

Why do you think Asperger’s makes people smart?

I don’t think Asperger’s makes people smart. There are many different ways to measure mental power. Often people with Asperger’s have powerful logical reasoning abilities, and the public tends to see people like that as “smart.” But you can be smart in other ways too. For example, someone with great social skills might not seem smart to some observers but the actual brainpower might be the same. You could also look at a great athlete . . . the fine control of his body all comes from the brain, and that’s yet another kind of “smart.”

So people with Asperger’s are just one example of smart. There are many others.

How do you get Asperger’s?

There’s a lot of controversy about this. I believe my own Asperger’s is inherited. You can see traces of how I am in both my son and my father.

Can Asperger’s be changed from a disadvantage to an advantage?

Yes. Read Look Me in the Eye and you’ll see how I did it. As we get older, the special interests that are annoying and troubling when we are kids turn into wonderful gifts as we move into the workforce and use our special interests. For example, as a kid, you can seem nerdy when you love dinosaurs and talk about them all day. But a grownup scientist who loves dinosaurs and goes out and makes great discoveries about them . . . he’s hailed as a genius and a brilliant scientist. That’s a good example of how life can change as we get older.