Sunday, June 28, 2009

The sequel to Look Me in the Eye

For the past couple of years, I have pondered what sort of book should follow Look Me in the Eye. I actually went so far as to write most of a book I called Beyond Normal, which illustrated Aspergian thinking through stories. However, I could never convince myself that book was a true successor to LMITE and this spring I decided to put it aside and start anew.

I thought carefully about who my readers are, and what they would want. The answer just sort of came to me in the midst of speaking engagements at special needs schools and colleges. I realized that there is no inspirational guide to Asperger’s for teens and their families, and I resolved to write one.

I thought of this project as a sort of Beginner’s Guide to Asperger’s. I think the finished book needs a better title, but that’s its message. I resolved to write a book that you could hand to a teen who was just learning about AS, and he’d feel good about himself after reading it. Not only that, he’d have some useful ideas and he would have thought the thing was entertaining to read.

That book began as a two page outline April 29. Two months later, it’s a 58,000 word manuscript, well on its way to completion at about 70,000 words. This story has pretty much flowed out of me naturally, and I’m now on the home stretch. I’d like to share its organization with you, and as for your suggestions to take this book the rest of the way.

Here’s a brief summary:

I start with an introduction, which is sort of a ten-page life story. I assume people who read this book have not read LMITE, but if they have, that’s okay because they each stand alone. After meeting me, readers will continue on to chapters describing the autism spectrum, and the history of Asperger’s, including Nazis, Untermenschen, and the resurrection of the diagnosis in the 1990s.

I illustrate the three kinds of people who make up the world’s population: There are those of us on the spectrum, of course. Next, there are Proto-Aspergians who have some AS traits, but not enough for a diagnosis. They are what you might call common geeks. Finally, you have everyone else, the neurotypical or nypical population.

Next, I have a chapter explaining the Asperger diagnosis from the DSM manual. The official diagnosis is rather brief, and I’ve elaborated on what I think some of it means. I think my chapter length definition is both more entertaining and more illuminating than the official description, but that’s just me.

I conclude the first section with a story on fixable disabilities, which is how I see Asperger’s. It’s my belief that we Aspergians will always have different brains, and most of us suffered some degree of disability as kids, but we have the power to work our way out of disability even though we are always going to be different. At age 15, there is no telling where you can go. It’s all in our minds.

Part one kind of sets the scene: who I am, what AS is, and all that stuff . . .

The next part of the book illustrates Asperger’s through stories of my life. People seem to like the storytelling style of LMITE, and I’ve used that here but all these stories are set in the childhood-young adult age range so they have more relevance to the teen/family audience. Part two begins with list of Aspergian traits and references to chapters where they are discussed. For example, Bullying is discussed in Lobster Claws and Animal Wariness. So a person who wanted to know about that could just flip to those chapters and read them.

In the next few weeks, I am going to post the intro to part two, and you can see the final chapter names and what I’ve covered. With every behavior, I either show how I turned it into a competitive advantage or I describe how I minimized the disability and tried to find value in something.

That's pretty much how I go through life. I find places my strengths are appreciated, and build them up, while all the while minimizing my deficiencies (of which I have plenty)

For example, I show how my special interests got me teased as a ten year old, but my fascination with waveforms, music, and electronics took me to the top of the world in the music industry. I show how I made the best of my blindness to other people’s social cues, and how I found places where I could hold my own.

Some stories illustrate practical things, like how I learned to share. I talk about my high school dream - finding a girlfriend. And I have some funny stories, like what I’ve learned from pig racing at the county fair.

The third part wraps the whole thing up. I describe some traps Asperger people can fall into – entitlement, lack of self reliance, and victimhood. I explain the secrets of my own success, such as they are. With that, the book certainly comes to an upbeat and inspiring end. The ideas for this book really sprang from the programs I’ve been doing at schools. These are the kinds of things teens and teachers ask me, and of course my answers are very abbreviated when I’m speaking to a crowd. A book allows me to lay it out better.

After struggling all that time with the Beyond Normal idea, I’m surprised at the speed with which this manuscript has appeared. It has come out more like LMITE. Hopefully that’s a sign it will move into the marketplace in the same way, too.

Right now, I am writing the remaining stories for Part II. I have the whole arc of the thing worked out, and I’m filling in the details. I’ve got a few friends reading stories and offering suggestions, and I’m now turning to all of you for your thoughts.

If you were asked what you would want in a book for teens, parents, and teachers/counselors/doctors/etc, what would you say? Please let me know your thoughts and I will do my best to consider and integrate your feedback.

I’ll consider story ideas, philosophical questions, comments . . . anything at all.

It’s taken me a long time to get to this point, but now that I’m here, things are moving briskly. I expect to show this book to publishers later this summer.

Tuesday, June 23, 2009

John Goes To Washington



Last week, I went to Washington, DC to serve as a public reviewer for the National Institutes of Mental Health, on a panel that provided peer review of grant applications relating to autism research. It was a real honor to be invited, and a great responsibility. The weeks leading up to the meeting were busy for me, reading the large batch of applications.

The photo above shows me with three of my fellow reviewers. From left to right they are Anshu Barta, a pediatrician from California; Pat Schissel, an Asperger advocate from NY; me; and Aspergian author and professor Stephen Shore. We're in the lounge after a successful session chewing through applications.

As a reviewer with a personal stake in autism, I did my best to advocate the research that will provide the greatest benefits our community and our society. With all the questions we need to answer, and all the different ideas and approaches, I faced some hard decisions!

The applications covered a lot of ground. We considered applications for all manner of studies, covering statistical data, cells, animals, infants, teenagers, and adults. The researchers themselves were a diverse group, with public health specialists, psychologists, psychiatrists, neurologists, geneticists, biologists, and scientists and doctors from a host of other subspecialties.

The breadth of researchers and applications really gives one a sense of the scope of the problem we face in unravelling autism's secrets. So the issue for me was: Which efforts are likely to have the greatest public health significance and impact on the autism community?

Some research had applicability to anyone on the autism spectrum, while other work was directed certain subgroups. That made our ranking job harder, because we have so many needy groups. One thing the review process made clear to me was the tremendous diversity of the American population.

The applications I read had already been vetted by one group of scientists; the review groups like the one I participated in join the process pretty near the end of the road. My job was to provide a public perspective, and a stakeholder’s insights. For that reason, I and my fellow public review committee members were chosen for our personal connection to autism. In a sense, we provided a counterbalance to the scientists and doctors who fill the other seats on the review boards.

This particular request for applications (see http://www.nimh.nih.gov/recovery/index.shtml#autism-spectrum-disorders) has allocated to it $60 million to fund between 40-50 grants.

Now that we’ve voted, the applications will wend their way through some additional NIH processes, with the final decision on funding being made by the participating NIH institutes by the end of September. Since this money is part of the Government’s stimulus package you’ll be able to read how it got spent right next to bridge building and courthouse renovation, on www.recovery.gov. I suppose you could say this is the medical equivalent of road construction. Congress said stimulus proposals had to be shovel-ready, and in a sense, these applications are. All the research being considered is intended to deliver some kind of meaningful benefit within twenty four months.

So here’s how it happened . . .

We started at 7:50 on the morning of June 19, and finished by 5:00. Three review groups of about thirty people each tackled several hundred grant applications. Here we are, in the thick of it:

In my group there were five public reviewers, twenty-some scientific reviewers, a scientific reviewer as chair, a scientific officer from NIMH, and various staffers. The room was pretty full. The list of reviewers for each meeting is available through the NIH website, although the list of grant applications stays confidential.

Before the meeting, each application was reviewed by several scientists with expertise in the particular field. They assigned scores from 1(best) to 9 (worst). The scores of the different reviewers were averaged to form a composite score, which was like the qualifying lap time in a road race. That set the order in which we considered the applications.

That part of the job was several weeks of hard work for the initial reviewers, and even more work for the NIH staffers who had to coordinate the whole thing. Review day was the culmination of all their efforts.

We opened the meeting with the top scoring application, and proceeded down the list. For each one, the lead reviewer gave us a summary of the application, and its strengths and weaknesses as seen by the various reviewers. Then the floor was opened for questions and comments. Any of us with an opinion were free to voice it regarding the strengths or the weaknesses of the application.

Any of you who know me won't be surprised to hear I had plenty of opinions.

After all the comments were heard, the chair read us the scores assigned by the original reviewers. We were all asked to assign our own scores, which we did. In some cases I'm sure we agreed with the original scores, whereas we gave other applications significantly higher or lower ranks.

I was pleased to see disparities in the scoring from time to time, because it told me the committee members truly had their own opinions. I did my best to score them fairly, but it was a hard job
We all scored each one.

I didn't know what to expect, having never done this before, but I have to say I was pleased and I felt the process was fair. People paid attention when any of us spoke, and I'm sure our opinions did influence the voting. So our individual voices did indeed affect the outcomes. In my group, 28 of us cast votes, and it was our votes that made the final score for each application. I was pleased to note that someone spoke up for just about every application, in one way or another. In some cases they were critical, while other times they were laudatory. No one was passive.

Looking in from the outside, it seems like everyone has an opinion about what our government should fund. But when it comes time to actually choose, the job is harder than it looks. It’s like being a judge – we have a duty to be fair and evenhanded, despite our personal preferences.

It was a long day, preceded by a long two weeks getting ready. But now it's done. I'm proud to have made a contribution, and honored to have been invited.

Friday, June 19, 2009

The autism review is done

We started at 7:50 this morning, and finished by 5:00.

It was a long day, and a long two weeks getting ready. But now it's done. I'm proud to have made a contribution, and honored to have been invited.

I'm headed back home in the morning. Then, Sunday, I am off to Portsmouth Abbey for the Newport Car show. I hope we have nice weather.

Tuesday, June 16, 2009

The NIH and autism research; John goes to Washington

As some of you know, I was named to the public review board for the National Institutes of Mental Health, to review and vote on grants for autism research. It’s a real honor to be invited, and I take the responsibility seriously. Therefore, I’ve been busy this last little while, reading the current batch of 100+ proposals. I head to Washington this Thursday, to discuss and vote. You’ll be able to read the results of our meeting on the recovery.gov and nih sites as soon as they are ready.

Sunday, June 14, 2009

Photography as a window to our mental state

Several people who commented on my pictures asked, How do you do it?

The implication of their question is that I do something to achieve a particular photographic result. As I have said before, most of the secret is composition. You have to see the photo in your mind and imagine it as the camera will see it.

The trick is taking photos that make people say, That's just what I remember! It has been my experience that photos that elicit such a response are taken from vantage points the audience never saw. They are often much simpler and indeed totally different from the scene most people observed at the event in question. Yet people think it's just what they saw.

That is the secret of composition and vision.

The second factor is state of mind. Your finished images often reflect your internal state, as suggested by the examples below:

This image shows evidence of depression. Note the deep shadow and total absence of color:



This one is reflects a slightly better state of mind. Some color is visible.



This one is pretty average. Some color. Reasonable sharpness and clarity



This images shows the effect of excessive alchohol consumption



This one shows the influence of acid



I think this one shows just the right touch of mania


While this one has crossed the line to psychosis




The interesting thing is, most of the real world is rendered in muted pastel shades. Yet the "realistic" images are often the most vibrant and vivid. As I said, some measure of mania or even schizophrenia is required to create them.

Saturday, June 13, 2009

Some images from the berkshires

This is the gorge at Chesterfield. It almost looks like a painting in this photo:



Swirls on the water:



They say the house has been haunted since they dug up the bodies in '89



A waterfall in Montague:



Fast water:



A quiet spot on the upper river:



Fly fishing

Wednesday, June 10, 2009

Why can't mechanics read?



Last week I made an unscheduled visit to the repair center - University Health Services - to get my ear fixed. After removing a large object – said to be wax and hair – from my ear, the nurse practitioner and I chatted for a few minutes. Knowing I write about how we think, she asked me some questions. One of them surprised me.

She said,

Why can’t mechanics read?

I have been asked many things, but that one was new to me. My first thought was, Is this one of those “have you stopped beating your wife yet?” questions. I quickly concluded it wasn’t. She was genuinely curious. I asked her to elaborate.

The little wheels in my head began spinning as she described the mechanics she knows, her cars, and her friend at Caterpillar Diesel School.

I was able to define the parameters of her question a little better over the next few minutes:

First of all, she was referring to males in the auto trade. Either she didn’t know any female mechanics or those she does know, read.

Second, all the mechanics in question are extraordinarily talented with machines. They fix things for love, not just a job that pays more than Burger King. She wasn’t referring to the kids at the quick lube.

Third, it’s not that these mechanics can’t read. It’s what they read. They read Popular Mechanics but won’t read a novel like Jane Austen. They won’t read instructions on a computer monitor but can learn anything by standing next to a master.

Fourth, by their own admission, many of these mechanics have some kind of learning disability, like dyslexia or even Asperger’s.

Taken together, those points led to her question, why can’t mechanics read? She explained that a friend teaches at the Caterpillar School. According to him, when they moved from hands-on instruction in the shop to on-screen instruction in the classroom, the class foundered. Half the students dropped out, and those that remained did less well, in terms of acquiring real-world skills.

She took that to mean that a weakness in reading comprehension or ability was part and parcel of having a great “mechanic brain.” Could she be right? I really have no idea. I hope a decent number of mechanics will chime in with their thoughts on the matter.

I do know that I am a mechanic, I have Asperger’s, and I learn best by experimentation rather than by studying textbooks. And I read technical stuff and nonfiction almost exclusively. I don’t read novels for entertainment.

If I were choosing an auto shop class, I am sure I’d pick the hands-on one over the computer based one. In fact, until she talked about it, I never even thought there was any other way to teach mechanics.

There may well be some neurological tie here. Perhaps the brain wiring that makes a natural mechanic and the wiring that makes a lover of literature are indeed mutually exclusive. I don’t know. Does anyone?

Some of us – like me - are primarily visual learners. We learn best by picking a thing up, twisting it, studying it, and even taking it apart. That’s a key skill for a top mechanic. If that’s how we are, it does not mean we can’t read; it just means we learn by doing when it comes to solid mechanical things.

Do our schools accommodate learners like that? I don’t think they do.

Our schools tend to focus on learning from the pages of a book or off a computer screen. That may be fine for learning calculus or figuring out how to trade stocks, but it won’t get your car fixed, nor will it clear your clogged drain.

I think our educational system has essentially abandoned a whole class of hands-on learners in pursuit of a white-collar-everyone dream where all the learning comes from books and every graduate goes to work at a computer screen. In pursuit of that goal, we have essentially lost a whole generation of kids from the trade workforce.

If they are forced into the white-collar book-learning world, they suffer. And meanwhile, there’s no one new to wire the house, fix the drain, or repair the car.

Can our schools embrace hands-on learning alongside paper learning? I think there’s a place for both, and society desperately needs those young people with hands on skills and a love of machines.

I never before considered that dilemma in this light.