Look Me In The Eye

What will the new DSM definition of autism mean to us?

noreply@blogger.com (John Elder Robison) — Mon, 23 Jan 2012 20:55:00 +0000

There’s been a lot of talk about how the upcoming DSM V definition of autism will affect people on the spectrum. Last week’s news stories really got people talking, especially when one doctors suggested 75% of today’s Asperger population would not qualify for a diagnosis under the new definitions.

Let me say at the outset, I think that 75% statement is inaccurate, and a substantial over-reaction to the available data.

Many in the community were already upset at the DSM V proposal to combine the various autistic conditions under the single category of autism spectrum disorder. Any change in diagnostic terms or definitions is worrisome to those who depend on receiving diagnostic-specific supports from schools, social service agencies, or health care providers.

In the following paragraphs, I’d like to look at the proposed definition of ASD, and then consider what it may mean for those on the spectrum and their families.

This is the proposed definition of ASD. For a person to be diagnosed, they must meet criteria A, B , C, and D.

A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:

1. Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,

2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.

3. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people

B. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:

1. Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).

2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).

3. Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

4. Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).

C. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

D. Symptoms together limit and impair everyday functioning.

As you can see, the ASD definition above is very similar to, and clearly derived from, the DSM IV definitions it will replace. Given its similarity, I think it’s an over-reaction to suggest that any large portion of the current diagnosed population would “lose their diagnosis.” People with Asperger’s or PDD NOS will have to obtain a new diagnosis if the depend on it for services, but I don’t think that will be a problem.

The primary mission of any clinician is to help others. That belief make me think those clinicians will be looking at today’s Asperger and PDD NOS people and thinking, “What do I have to do to help this person?” Most clinicians are on our side, after all.

All of the criteria remain subjective. That means clinicians still have great latitude in defining phrases like “symptoms impair everyday functioning.” A clinician who diagnosed a person with an ASD condition under DSM IV is not at all likely to withdraw that diagnosis today. I do think there will be upheaval, schools and others send people with Asperger or PDD NOS diagnoses are sent back to clinicians for re-evaluation under the new guidelines.

I have no doubt that process will be troublesome, costly, and time consuming but I doubt very much it will result in people who had a disability diagnosis coming out with nothing.

A doctor who thinks you or your son is on the spectrum is not likely to revise that opinion, just because the wording of the definition changes. My experience of human nature reassures me on that point, even though I know insurers and school districts are pushing in the other direction.

In my opinion, the biggest change in the new definition is the addition of a severity grade. Here is how they define level 1, the least severe affect:

A - Without supports in place, deficits in social communication cause noticeable impairments. Has difficulty initiating social interactions and demonstrates clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions.

B - Rituals and repetitive behaviors (RRB’s) cause significant interference with functioning in one or more contexts. Resists attempts by others to interrupt RRB’s or to be redirected from fixated interest.

Once again, the definition is very open-ended and subjective. For example, the word “supports” could be taken to mean many different things. Once again, I think clinicians will retain wide diagnostic latitude. To me, that suggests that most people who have a diagnosis, will have an ASD diagnosis under the new definition. And a kid who is diagnosed on the spectrum today, will still be ASD next year when this change takes effect.

I do understand why people express concern, when they say words like that might be interpreted very narrowly for the purpose of reducing the number of individuals diagnosed. However, I do not think that was or is the intent of the framers of the ASD definition.

All that aside, I do think people who receive services face a real threat of interruption or disruption when this change takes place. Not because they “won’t have a diagnosis,” or for any clinical reason. Rather, I think people with autism are at risk to lose services because ignorant, ethically challenged, or financially pressured bureaucrats will use the diagnostic evolution as justification for changes that may benefit some other group at our expense. Obviously, not every government official or service provider will think this way, but some surely will, and we need to both be on guard and continue to raise awareness about this risk.

For this is the real threat to the autistic population, from the DSM changes. "Losing a diagnosis" is a red herring.

Many school are already using any loophole they can find to escape IEPs and their obligations under the spirit of the law. State social service agencies can be even worse. A big change like this could make that kind of treatment easier for them to justify and perpetrate, and that is bad.

For that reason, I urge all of you to speak up before your government officials, school boards, and elsewhere to make sure they know that a change in diagnostic wording does not in any way change our need for support. Even if the diagnostic codes numbers change, their obligation to provide educational, social, medical and therapeutic services should remain unchanged. If the government chooses to require people to obtain a new diagnosis to suit the new DSM, I absolutely feel it is their agencies' responsibility to pay for same, and continue services until obtained. That is a point we must make very clear - lest this become a barefaced resource grab when the change takes effect.

I look forward to the day we have solid tests for autism, but even then, I am sure the fight with social services and schools will continue. Because it all comes down to money, in the end. Our various government departments - both State and Federal - have not yet made the funding choices to fully support the population we have identified today, let alone the folks who are yet to be diagnosed.

Snakes Attack When You Least Expect It

noreply@blogger.com (John Elder Robison) — Tue, 03 Jan 2012 21:01:00 +0000

You know, I have had a lot of strange experiences during my lifetime. Some are shared with other people. Others are not. Until today, I never thought I'd meet someone else who was attacked by a Flying Snake. But folks, here he is:

January's Guest Blog, You Can Choose Your Own Adventure, by David Finch

When I resigned from engineering to write full-time, my first order of business was to convert the spare bedroom in my parents’ house into my own, personal office space. I’m married, I have two kids, and I have my own house, but my parents still work -- my dad is a farmer and my mom a teacher -- so their house is quieter than mine, and thus more conducive to thinking.

Their food is also free, and their neighborhood is prettier. So why wouldn’t I sponge off of them? When I need to clear my head at home, I might go for a walk and see, at best, a dog peeing on one of the scrawny saplings our developer planted along the sidewalk, or half a dozen kids zipping around on motorized scooters. Images that don’t inspire my best thinking.

But my parents’ house is situated in a sleepy rural neighborhood in which sizable new homes are surrounded by impeccably landscaped yards and massive old trees. Down the road a little way is a pond, and beyond that, some woods. At the pond, I’m guaranteed to spot a handful of turtles mingling on a log, a nervous muskrat trolling along the shoreline, or half a dozen hawks riding air currents overhead. It’s peaceful, and my mind can wander as needed, which is usually -- usually -- a good thing.

I was out for my afternoon walk one day last September when I spotted a dead snake lying belly-up on the side of the road. He wasn’t big, this snake, maybe eight or ten inches long if you stretched him out. I gasped, leaping sideways into the road to avoid stepping over it -- leaping without looking into the road where cars drive, to avoid stepping over a tiny, dead snake.

Here’s the thing: I hate snakes. Or rather, I fear them. I always have. In the second grade, my class watched a film strip showing the gruesome manner in which a snake kills and consumes its prey: you’re either bitten to near-death and swallowed, or squeezed to near-death and swallowed. That was it. Those were your options when it came to being attacked by a snake.

From that day forward, I understood that the only thing a snake is supposed to do in life is to kill -- to strike its victim, savagely and horribly, with precision, then detach its jaw, and subsequently devour the twitching body of whatever animal or second grader it just attacked. I diligently limited my experience with snakes to the pages they occupied in my parents’ Encyclopedia Brittanica. Even there, confined to the page as two-dimensional images, I was terrified by them. Their horrible bodies, their vicious fangs, those cold, lifeless eyeballs. I could look at a picture of a rattle snake for maybe ten seconds before I got spooked and had to turn the page, fearful that it might come to life and chase me around the house.

If I had to guess, I would say that the snake I encountered lying dead in the road last September was a garter snake. Totally harmless, not a creature to fear. There was nothing particularly remarkable about him, either, except for the fact that his body, despite having expired at some point, was still perfectly in tact, and, curiously, was resting upside-down. I took a moment to consider how this might have happened, and drew a blank. Was he showing off to his friends when he realized he couldn’t get himself right-side-up again? Had he died while they went for help?

I tossed a small rock at him to make sure he was actually dead and not just trying to deceive me, and when he didn’t react I moved in for a closer look. I felt as though I was walking on a tight rope between two skyscrapers; my hands were sweaty, my mouth dry and cottony. All this, in response to a lifeless snake no longer than my flip-flop.

I expected I might find some guts or gook or something, but there was none. He hadn’t been flattened by a car or bicycle, and there was no trauma on his flesh to indicate he’d been attacked by a predator or pawed to death by a playful neighborhood dog. His body just lay there, his lime green underbelly glistening in the sun.

I continued on my walk, but couldn’t stop thinking about the snake. How did he end up like that? I wondered. And suddenly it hit me: Had he been dropped?

I was halfway to the pond when my theory began to take shape: A hawk must have nabbed the snake and taken him for a little ride before losing his grip and dropping him a few hundred feet to the pavement below. Or perhaps the snake wriggled free in an instinctual and ironic attempt to escape the clutches of his captor, only to realize how screwed he was as he plummeted to his death.

My thinking continued: As light as the snake must have been, a fall from a substantial height wouldn’t necessarily splatter him, but it would certainly be enough to kill him. Wouldn’t it? Yes, he must have escaped the clutches of a hawk, fallen from a great distance, and landed right there where he died. That’s the only way it makes sense.

I was quite satisfied with my sleuthing and had all but moved on when I realized the terrible implications of my theory. If the snake had been dropped by a bird as I suspected, this would mean that at any given point in time, a fucking snake could just fall unexpectedly from the sky and land right on my head. I had never in my life considered this to be a real possibility until that moment, and just like that, I had a new fear.

Suddenly, the road, the ditch, the neighbors’ driveways, the trees—the entire landscape—was just crawling with imaginary snakes—which are, without a doubt, the worst kind of snake. In fact, the only thing more terrifying than a real snake is an imaginary snake, because unlike a real snake, the imaginary kind always appear out of nowhere without any warning. Imaginary snakes never slither off into the grass to avoid getting stepped on. Instead, they chase you at high speeds knowing that, at some point in your panicked sprint, you’ll stumble and fall. And that’s when they’ll drop from the sky to wage their brutal assault.

I knew at that moment that I would have to find a new place to write.

This is what happens when obsessive thinking is married, as it is in my neurological construction, with a vivid imagination. I tend to get pulled into these absurd and terrifying rabbit holes, unable to snap out of it and think about anything else, for hours or even days at a time: What is my hotel room going to look like when I go to New York next week? Kristen said she’d be home at 4:00, and it’s 4:02, where is she? Why was that store clerk so rude to me? And it’s not exactly my brain’s fault when I get stuck on these thoughts, but mine.

I may not be able to control which thoughts pop up at any given moment, but I can decide, consciously, whether or not to indulge them. I can’t choose to never again think about a snake, but I can choose to create a ridiculous storyline involving snakes being launched at me by hawks, and apparently I can even choose to accept that storyline as a likely reality. Even if it means scaring the crap out of myself, despite the fact that I don’t really enjoy feeling scared.

So, why wouldn’t I use my powers of creativity and self-persuasion to imagine a scenario in which snakes don’t fall from the sky? A scenario in which snakes do slither off into the grass for fear of being trampled? In other words, why do I sometimes choose to believe silly, illusory thoughts, rather than reality -- which is, by definition, real?

I don’t have an answer to these questions. Fortunately, though, it doesn’t really matter why I choose to believe one thing and not another; all that matters is that I can choose -- that much I can control.

So I’m working on it. I’m practicing interrupting the cycle of terrible, worrisome thoughts with an act as simple as taking a breath, and I’m also practicing not getting pulled into the rabbit hole to begin with. Two very different endeavors that are equally worthwhile, both of which are totally within my control.

And I must say, it’s going fabulously. I still obsess over hotel rooms for some reason, but no longer am I convinced that snakes can rain down on me from the heavens; I now carry an umbrella only when it’s raining.

About the author: David Finch’s essays have been published in The New York Times, Slate, and Psychology Today. His debut memoir, The Journal of Best Practices : A Memoir of Marriage, Asperger Syndrome, and One Man’s Quest to Be a Better Husband, was published by Scribner on January 3, 2012. David lives in northern Illinois with his wife, Kristen, and their two children. Please join David on facebook.

Looking forward at the autism spectrum

noreply@blogger.com (John Elder Robison) — Tue, 03 Jan 2012 02:09:00 +0000

Where is this autism spectrum of ours headed?

It’s the time for New Year resolution, and mine is that we autistic individuals rethink how we present autism to the public.

By now you’ve likely read that the latest version of the DSM guide proposes to merge Asperger’s, PDD-NOS, and all other autistic conditions into one diagnostic category, to be called Autism Spectrum Disorder.

A number of parents and advocates for people with very severe autistic impairment have criticized that move, saying it will render people with both severe autism and intellectual disability almost invisible.

Some even feel the traditional autism diagnosis has been “taken away from them,” to be replaced by a broader, more Asperger-like diagnosis.

I agree with those sentiments.

Thirty years ago, the largest percentage of kids diagnosed with autism also had some degree of intellectual disability and were by any standard, near 100% disabled. Today, the majority of kids diagnosed with autism do not have intellectual disability and most will grow up to live and work independently. That’s not because the number of kids with intellectual disability has dropped; it’s because the autism diagnosis is applied to a much broader swath of population.

To understand how this has happened one need only look at how the phrases used in the definition are interpreted. For example, “Substantial communication impairment,” was at one time a euphemism for, “unable to have a conversation.” Today it can mean that, or it can mean, “has difficulty reading body language and interpreting unspoken messages.” The range of meaning of those three simple words has expanded tremendously.

To a lay person, an autistic person who cannot hold a normal conversation presents totally differently from one who is highly articulate, but misses subtle social cues and facial expressions.

Yet that is the reality of the autism spectrum as we know it today. We have a large and growing population of very different individuals, under one very broad diagnostic umbrella.

As the autism spectrum expands to encompass more people with progressively greater verbal and written communication skills, those individuals have begun speaking for themselves. By doing so, they are altering the public’s perception of what or who an autistic person is or may become.

This reshaping of perception has moved the public’s concept of autism higher on the IQ range, with more and more people seeing “autism” as a euphemism for “eccentric geek,” or, “genius,” which is most assuredly is not. Popular television shows like Parenthood and Big Bang Theory reinforce that trend.

At the same time, the population of people with intellectual disability and severe autistic impairment remains fairly constant. Those individuals are not generally able to speak for themselves. They are most often out of the public eye, and they may rightly feel they are rendered nearly invisible by this change in perception.

What might we do about this?

For starters, all of us who occupy the more verbal and articulate end of the autism spectrum can keep in mind that it is a spectrum, and some of our fellow spectrumites are much more verbally challenged than we.

Every time a person with milder autism speaks of his own challenges, those words add to the body of information the public uses to define autism. The more we move that balance from disability toward eccentricity, the more we harm our cause, albeit unwittingly and with the best of intentions.

When self-advocates’ autism talk shifts primarily to rights and entitlement, the need for new therapies, treatments, and services is forgotten. When we focus on entitlement, we create the impression that our problems can be solved by legislative action, much like the civil rights laws did in the sixties.

Entitlement and equality are great ideals, but they do not remediate disability. We must not lose sight of that fact, when building autism awareness. We are not equal people fighting for equal treatment. We are disadvantaged people fighting for remediation of our disability, and the opportunity to be treated fairly by society. That is a very different proposition.

Autistic brain differences may indeed be a component of creative genius, but they are more often a contributor to significant disability. We need to balance our own desire to “think positive about our potential” with the need to keep the public more in touch with current reality and the services we so desperately need.

The autism spectrum still includes a large population – several hundred thousand in the US alone – who currently have no realistic hope of substantial employment. That is a tragedy. And it’s not because they are discriminated against. It’s because they are disabled. Not only that, they are disabled for reasons we don’t understand and in ways we don’t know how to fix.

I suggest that is the thing we need to fight for the most, as we build autism awareness. We need help remediating the many, varied, and often profound disabilities that touch those of us with autism. Only then can many of us fully integrate with society in the way we all desire.

For this New Year, I wish for all of us to keep our more challenged brothers and sisters in mind whenever we discuss autism with the public. It’s great to be upbeat, but for many, autism remains a crippling disability. The fact that some of us emerge from disability as an adult does not make the challenges faced by others who do not any less real or meaningful.

If we are to be a truly great society, we must aspire to a great quality of life for all, and that means those of us who cannot speak for themselves must not be forgotten in that quest.

Christmas

noreply@blogger.com (John Elder Robison) — Sat, 24 Dec 2011 22:44:00 +0000

Are you ready for Christmas once again? I’m getting there . . .

When it came time to wrap the presents for tomorrow, I found my supply of coal depleted. Nothing remained but a few crumbs. Local urchins must have been pilfering when I wasn’t looking. Something had to be done, and fast.

I drove a few miles north to an area where the railroad runs close to Northeast street. Parking the car in the weeds, I set off down the track. A mile or so later, my objective came into sight: the old University coaling station.

I walked down the line until I reached the end, where years of coal cars had covered the ground in fine black gravel. Bending down to scoop a few handfuls, my eye was drawn by a glitter just ahead.

Slag.

I’ve walked thought that area countless times, and realized I had missed it all those years. Millions of pounds of coal had arrived through that siding, all to be burned at the University heating plant. So what happened to the residue? The ash and slag were cleaned out of the furnaces on a regular basis.

Some of the ash was used by the Mortuary College, to train future crematory operators. Others in the same program practiced disposal, spreading the ash in a fine layer over the School of Farming’s fields.

They never did find a use for the hard, glittery slag. In the end, the bigger chunks were piled next to the coal, and loaded onto trains for disposal somewhere out West. Somewhere in the desert, whole neighborhoods have been built on University slag, held together with fine cemented fly ash.

The power station is long closed, replaced by an efficient nuclear reactor, but the siding remains, rusting away slowly. The brightest gems of slag are gone, but I found enough glittery bits to make a special Christmas indeed.

Combined with a few handfuls of fine pebble coal, the effect will be memorable.

I’m off to get ready. The kids are coming soon.

Toys

noreply@blogger.com (John Elder Robison) — Fri, 23 Dec 2011 21:08:00 +0000

This morning one of the guys at work showed up with a doll for his kid. Look, he showed me, it pees and poops! I turned it over and sure enough, it did. Looking at the box, I saw the thing was a product of a major toy company, to boot.

It reminded me of some of the other toy ideas that passed before our eyes, back when I worked in R&D at Milton Bradley.

For example, there was Baby Black And Blue. BB and B had a special plastic skin, that changed color if you grabbed her by the legs and whacked her hard against a tabletop. Just like a real baby.

That one never saw the light of day, or the light of stores.

Then there was Feed the Alligators. That was a two person game, where one kid operated the mouth on a wooden alligator, and the second kid operated a little seesaw that launched little babies toward the water.

I remember playing that game for real, when the big bully kids would launch me and the other tykes off our seesaws. We learned to exit fast when we saw them coming, lest we go aerial.

F t A was actually sold, for some years. You can probably buy a copy yourself on ebay.

A Gift and an Opportunity for Christmas

noreply@blogger.com (John Elder Robison) — Thu, 22 Dec 2011 01:27:00 +0000

Have you ever looked at the men and women who ring bells, accept donations, and hand out little gifts outside our malls and thought: I wish I could do that! Help the needy and raise some cash for a drink or even a gift?

Well, now you can. All you need is a can for the money, and a sack of Perfect Gifts for the Needy. Coal is widely recognized as the stocking stuffer par excellence, and of course it's good for blacksmithing, home heating, and even power generation. In its natural form, it's a smooth and beautiful black, waterproof and durable. A gift for the ages. Think of each stone as a diamond that didn't quite make it.

My friends at Penn Keystone have all you need. They can sell you fifty pounds, bagged, for less than thirty cents a pound. Compare that to the prices at Toys R Us, or Macys! Fifty pounds of anything from those stores will cost far more than fifteen measly dollars!

Give them a try; you won't be disappointed. Remember - Real Santas use Real Coal. American Coal. Accept no substitutes.

http://www.penncoal.com/wst_page4.html

On the road with April Wine

noreply@blogger.com (John Elder Robison) — Tue, 20 Dec 2011 14:10:00 +0000

Every country has it's big rock and roll bands. We Americans assume the bands that are big here, are big all over the world. In some cases, that's true. But every country has its own musicians, some of whom are very popular at home while being totally unknown here.

That's the case right here in Canada, where April Wine is huge all over, yet few in the USA have ever heard of them. Founded in the 70s they are still on tour today.

April Wine will always be special to me, because I turned 21 on the road with them, riding the ferry to Newfoundland the night of August 13, 1978.

Yesterday I was going to through old papers, and I found my April Wine tour schedule, my tour pass, and an old sound system slide rule calculator.

Lots of people think touring with a band is glamorous, but it's hard, hard work. This tour had gone on the road in July, touring the Calgary Stampede, and hockey rinks across eastern Canada. After a short break, the tour resumed August 15 at Humber Gardens, a big barroom in Cornerbrook, Newfoundland. We played till midnight, then tore down the gear, packed it, and hauled everything through the night to the next night's show at Grand Falls. We did another one night stand there, and played Marystown the next night. Then we got a break with two nights at Memorial Stadium in St. Johns.

After that, the tour calendar optimistically says "OFF" for three days, but what we really did was pack all that gear into cases and ferry it to Nova Scotia for the next leg of the tour. It may have been "OFF" for the musicians, but it most assuredly was not off for us.

Most all our shows sold out; the tour was a huge success for the band. It was hard work for me, and everyone else who made it happen.

Canadian readers will find a story about April Wine in the opening of Be Different, which goes on sale across Canada in paperback this March.

Looking at the tour pass, you can see how I made a lanyard from folded duct tape. Lanyard cord was scarce, but we always had plenty of tape!

Love is blind - Marriage is the eye-opener

noreply@blogger.com (John Elder Robison) — Tue, 13 Dec 2011 21:29:00 +0000

This afternoon, I'm pleased to present a guest blog from my friend and fellow author David Finch, whose Journal of Best Practices makes its debut in bookstores in just three more weeks . . .

When people meet me for the first time, they’re often surprised to learn that I have Asperger syndrome. “Oh, my,” they say, sometimes slowly and clearly, as though they’re now addressing a child. “It is really remarkable how well you’re able to handle yourself socially.”

As compliments go, it’s not so bad. Still, I can’t help but feel a little like an unfrozen Neanderthal when I hear comments like that. “You mean to tell me you’re only thirty-four years old and you managed to come here all by yourself?” The implication is that two minutes ago I was just another dude standing around in a sport coat, smiling unexpectedly, but now that I’ve outed myself, I’m Asperger Guy, and it’s a wonder I haven’t been yapping the whole time about pygmy fruit bats or the history of the shoe.

What can I say? People are bound to be surprised. One of my special talents is masking certain behaviors, a skill set I’ve been cultivating since childhood, when began my lifelong career of wanting to blend in. Even I didn’t know I had Asperger’s until I was thirty years old; the prevailing diagnosis throughout my early life was that I was peculiar. Talk to me long enough, or catch a glimpse of me lumbering around the cocktail party, and you’d find this assessment still to be fairly accurate. But at first glance, you might not call it Asperger’s. This is not uncommon. Some with Asperger’s may appear more or less not-Aspergian depending on the circumstances. I could possibly elude a diagnosis if I assumed the right character while talking to a psychologist for an hour or two.

My wife, Kristen, knows this all too well. We had been friends for years—I was always that special (dorky) friend of hers, the quirky one who made her laugh in a certain way that no one else could—and one day, we found ourselves in love. We dated for a year, a period of time that, in some ways, felt like a twelve-month-long audition. Be cool, I told myself, roughly ten-thousand times a day. Look normal. Act normal.

We got engaged, and still I did everything I could to impress her, because, as I understood it, that’s what a person did when they landed themselves a fiancée. I showered Kristen with affection and praise, went out of my way to act supportive, and never once voiced a negative thought or feeling. What was not to love about that guy?

After we were married, and we were living together around the clock, Kristen began to understand exactly what was hard to love about that guy: he wasn’t entirely real. By our third anniversary, the illusion I’d created had been shattered, and Kristen found herself married not to the husband she’d always wanted, but to a husband who had no idea how to go with the flow. A husband who lost his temper whenever his concentration was disrupted—even when it was disrupted by an act of affection, such as a kiss or a simple hello. A husband who couldn’t show her the kind of support she needed.

Despite the fact that she had been working with children with autism for several years, Kristen hadn’t recognized my mixed bag of baffling behaviors and frequent man-tantrums as Asperger’s (of course, no one else, including me, had recognized this either). We had been married nearly five years before her suspicions reached an apogee and she realized I could actually be on the spectrum. Some are amazed by this, but it does not surprise me at all.

A toad analogy, if I may. I’ve been told that if you toss a frog into a pot of boiling water, it will immediately try to escape, but if you place a frog in a pot of water at room temperature and gradually bring it to a boil, the frog will not try to escape; it’ll just boil to death. (I don’t know who on earth conducted these experiments, but I like to think it’s true. We can also assume that I’ll be the one in hot water for making my wife a frog in my own analogy...)

Marriage can be a slow boil. When you’re married, and things aren’t going so great, the threshold of pain and drama and wackiness tends to creep up imperceptibly as you go about your daily lives. If, when you were blissfully dating, you could somehow fast-forward to a period in your marriage when that threshold of pain is unfathomably high—five, ten, fifteen years into the future—you would experience the darkness all at once, and you might decide to walk away from the relationship, to leap from the pot. It would be that alarming. “Good lord, is this what our marriage is going to look like?! Welp, nice knowing you, do not keep in touch.” But life doesn’t work that way. Instead, you just sit in the pot, day after day, and boil to death, acclimated for better or for worse to the suffocating conditions.

There is another reason we wouldn’t have thought to call it Asperger’s sooner: I had never expressed to Kristen just how challenging certain situations were for me. Like how difficult it was to navigate social interactions, how exhausting it was for me to be “on” around other people, or how upsetting it was whenever my routine was disturbed. I hadn’t spent a great deal of time contemplating these things about myself. All I knew was that I seemed different from other people, yet prior to my diagnosis I just wanted to fit in. I wanted to seem, for lack of a better term and knowing full well that a word such as the one I’m about to use can swiftly, if unintentionally, stoke the ire of commenters everywhere, normal. As a guy who assigned unique personalities to numbers, was it asking too much to seem normal? I mean, who wants to think of themselves as being inferior? Who wouldn’t feel inferior if they were being mocked on a regular basis, even as an adult? Who has the presence of mind to say yes to their freaky, extraordinary selves, especially if they don’t know it’s okay—nay, advantageous—to be different?

So, how could Kristen have known what it was like to be me? I barely knew what it was like to be me—I didn’t even know there was a clinical name for being like me.

When she realized how many similarities I had with Aspergians, Kristen sat me down and guided me through a very informal evaluation. Though I am grateful to be married to someone who doesn’t spend her days regarding me through a diagnostic lens, I’m glad that Kristen instinctually pieced it together and invited me to participate in the evaluation. A person can learn a lot about himself when he answers more than a hundred questions designed to reveal precisely how his mind works. For the first time I understood who I am. And Kristen finally understood, too.

Until we went through that exercise, she could not possibly have known just how difficult it was for me to adapt to things, or how great a challenge it was for me just to understand how to be responsive to her needs. Or, in her words: “I never could have imagined how hard it sometimes is for you to simply be.”

That’s how Asperger syndrome can so thoroughly destroy a relationship that at one time seemed invulnerable. If it’s well-hidden, and you’re not specifically looking for it, the condition can reveal itself slowly, one misunderstanding and baffling meltdown at a time. But for Kristen and me it’s no longer hidden, and we used this knowledge of the so-called disorder to rebuild our marriage. With my diagnosis she found patience and understanding, I found self-acceptance and the will to learn to manage the behaviors that strained our relationship, and together—together—we are finding our way to the marriage we always wanted.

And it makes me wonder, as I sit here scripting tomorrow’s inevitable didactic lecture on pygmy fruit bats: How many of us are struggling with something that reveals itself in such cruelly deceptive ways? How many of us are plainly misunderstood, even by those who know and love us best?

AUTHOR BIO:

David Finch is an author and lecturer. His debut memoir, THE JOURNAL OF BEST PRACTICES (Scribner; January 3, 2012) is available for pre-order now. David lives in Illinois with his wife and their two children. Please join him on Facebook.

Some thoughts on the trades

noreply@blogger.com (John Elder Robison) — Mon, 12 Dec 2011 03:06:00 +0000

This weekend I finished another excellent book about our economy, and how we might recover from recession. One of the suggestions was that we should become better educated, as a society. To bolster that point, the author talked about college graduation rates, and the limited prospects for non-college-graduates who end up with low paying service jobs.

Where are the trades, in that writer’s mind?

I can just hear the answer now . . . Trades? What are trades?

All too often, writers divide the world of work into “educated and professional” labor performed by college graduates, and “minimum wage service work” performed by the unwashed masses; those of us who did not make it out of college or perhaps even out of high school.

That depiction does a great disservice to our young people as they contemplate their future career paths. For the trades still offer tremendous opportunity, and they are overlooked more and more today.

So what are the trades, you ask? Trades are specialized jobs that are taught by doing. People who work in the trades use both their hands and their minds to reason through problems and produce tangible results. In years past you learned a trade by being an apprentice. Today, you might learn a trade at a trade school, or academy. And some apprentice programs still exist.

Examples of trades are:

Carpenter

Auto, truck, or airplane mechanic

Computer service technician

Medical equipment service technician

Plumber

Electrician

Heavy equipment operator

All of those jobs require substantial skill that is developed through both study and practice, and all have different levels. One starts out at low wages as an apprentice, while masters make as much as most people in “professional” jobs.

The next step up from being a master is to own a small business that employs other tradesmen. Examples are my auto service company, or a local electrical contractor. Owners of successful trade business can make as much or more money than even high-level professionals, like doctors or lawyers.

Yet the path to success does not generally pass through a college and it is often overlooked.

There are three hundred million people here in America. It’s tradesmen who construct the places where we live. Tradesmen bring us the electric power, and the plumbing. Tradesmen fix our cars and trucks. The beauty of the trades is that they are not going anywhere. No one is outsourcing those jobs to India or China.

It’s true that the trades change. The job of fixing cars has changed tremendously over the past twenty years, as has the job of wiring a house or even installing plumbing. But everything changes. We all have to learn and adapt.

In some cases, fewer workers are needed in a given area. Construction trades are a good example of that today. With the housing collapse, we have a surplus of tradesmen who know how to work new construction. Yet we still have jobs in other trades, like auto repair, and we even have jobs for carpenters, plumbers and electricians in repair and maintenance.

I find working on things I can pick up and handle very satisfying. I know many other tradesmen feel the same. I like to fix something, see it work, and know it’s a job well done. That sense of personal connection and satisfaction is missing in all too many jobs today.

Tradesmen keep our world running. When your lights go out, you don't turn to an investment banker for help.

So why are the trades overlooked and dismissed? Maybe it’s time for a second glance . . .

What to do when you tangle your backhoe in the electric lines

noreply@blogger.com (John Elder Robison) — Tue, 08 Nov 2011 12:15:00 +0000

This past weekend we had unprecedented damage from an early snowstorm. Trees were down across all the roads in town, and many took powerlines down with them. I had to clear a dozen or more large trees just to reach the highway, less than half a mile from my house.

I used the front end loader on my tractor to break up the tree jams, and pick up the brush and move it aside so cars could pass. Anyone who’s ever run a loader knows that’s heavy and dangerous work as the trees bend and snap. You’re glad to be in a roll cage enclosed cab with some of those limbs come back to whack you in the face!

To clearing the road I’d scoop under a load of tree debris, lift it high, and dump it in the woods. That process went along uneventfully until I picked up a load of brush that was tangled with bare electric power lines. There are lots of stories online telling you to stay away from power lines. There are very few stories that talk about what you should do if you get up close and engaged with them. Today, I’d like to share my thoughts with you.

The conventional wisdom says that it’s fatal to contact live electrical power lines. That is certainly the case much of the time, but not always.

If you hit live power lines with a loader, backhoe, or crane, and you are inside an enclosed cab on the machine, you can probably emerge unscathed, provided you keep your wits about you and follow these steps.

When your machine touches the line, it immediately becomes energized to the voltage in the wires. If you are sitting in the cab, you get energized too. You don’t actually feel anything but a tingle, as no current is flowing through you, but you are suddenly in a very dicey position.

As long as you remain in the cab, the wires can’t touch you, and the current flows through the metal of the machine. If you get out of the cab, or a wire gets in, all that changes. If you touch anything outside the cab, the power line current will flow from the cab frame, into you, and out of you into whatever you touch. That's almost always lethal.

Touching a tree or anything outside your machine while in the cab will kill you. Touching the ground in an attempt to escape the cab will kill you too. So stay inside, windows shut.

That’s how most people who have accidents on construction equipment get killed. They hit a line, and then jump off the machine. That’s usually a fatal error. The ground under the machine is energized as the current flows through the wire, into the machine, and into the surrounding earth. The dirt within five to ten feet of the machine is going to be energized to a dangerous level. So you can be safe in the cab, but dead if you jump on the ground.

The wires present another danger. If the wire is outside, touching your loader frame, you are safe. If the wire gets inside, or touches you, you are toast. So don’t open the windows or doors.

If anyone sees you in this fax, wave them away, but do not open the doors. If they approach you, they are likely to be electrocuted by the field you are currently immersed in. Hopefully, no one else is around you.

The final danger is that the energy in the wire will disable the machine, leaving you unable to escape. When the energy flows into the machine’s steel frame, it has to go somewhere. That somewhere is ground, through the steel tracks or rubber tires that the machine sits on. That point of contact with the ground becomes a hot spot, both figuratively and literally. A tracked machine, sitting on steel tracks, could have the grease in the tracks burst into flame. A wheeled loader will have smoke coming from the tires as they begin to melt. Both situations call for fast action.

Disengage the machine from the wires, look around for other hazards, and back away. If the machine’s arms are tangled, remember the rig has enough power to break the wires, but you have to make sure you back clear, wherever they land. That is absolutely vital. Wires may be dark, and hard to see against downed trees or a dark roadway. It’s essential that you back at least twenty feet away from them before exiting the cab. If the ground is wet, back farther.

If for some reason you cannot back away, remain in the cab and use a cell phone or radio to call for help. When seeking help, the only thing someone can do is cut the power remotely. Any attempts to approach your energized machine will be lethal to potential rescuers. It’s far better and safer to get your machine out of danger under its own power.

Hopefully, you will never encounter powerlines in a construction machine. If you do, just remember. Stay inside. Keep your head. Disengage and back clear.

Once clear, flag the area as dangerous from a safe distance. When walking near downed wires it’s possible to step from an area with no charge to a lethally charged area with no visible indication of what is about to happen. In that sense, downed lines are more dangerous than the deadliest snake, because they do not even have to touch you to kill you.

Night

noreply@blogger.com (John Elder Robison) — Sat, 22 Oct 2011 02:24:00 +0000

Last night it happened again. Three in the morning I was awakened by the screams. It sounded like they went on for hours, but in reality they probably trailed off after a few minutes. This time, I stayed indoors, and I kept back from the windows.

I’ve never heard of them smashing windows to break into an unoccupied home, but they can certainly jump through glass if they see you behind it. And an open window is just an invitation.

Once they get inside, you have a real problem. Sharp teeth in a small space makes for a bad time. I have a knife if it comes to that.

Of course, windows on the second floor are safe, most of the time. Very few can leap that high. But if one does . . . Better safe than sorry.

There’s eight round of double-o buckshot in the gun, but I’m worried that might not be enough, if they swarmed in together. I’m thinking of ringing the house with lights, and setting up a position on the roof. A fellow could get up there with a rifle and an infrared sight, and pick them off in safety. Unless the birds get in on it too. Now that’s a scary thought.

This morning there was nothing to be seen but a large patch of blood and some hair, in the meadow between the house and the road. No telling what they got. That half a shoe we found the other day is still unsettling. And it’s going on three weeks since that kid vanished.

Snake wants to rig claymore mines around the edges of the lawn. I’m afraid of claymores, but it may come to that. We’ll see.

Meanwhile, darkness has fallen again, and I’m settled in for another long night. I hope the night vision I ordered arrives soon.

These posts get shorter and shorter because I don't want to run the lights to write at night. Anything I can see by, makes me visible to them. And that's bad. The electric power's been spotty too, and I'm wary of venturing outside to start the generator. Better rely on the batteries, and wait for dawn.

Maybe we should have rigged those claymores.

Tomorrow.

Animals

noreply@blogger.com (John Elder Robison) — Thu, 20 Oct 2011 14:10:00 +0000

I don’t know how long the screaming went on before I noticed. When I did, I lay very still and listened close to determine what was happening, and where. I concluded they were still on the outside, probably at least a hundred feet away.

Moving slow and careful, I turned toward the clock. It was 3:17 on a pitch black night.

It’s hard to say which is worse, the howl of the pack or the scream of a big cat. We get both around here. So far, they’ve stayed in the yard. I’ve got a shotgun loaded beside me, in case they change their minds.

The house was silent, up until the noise started. Outside was a different story. Wind, rain, and the unknowable sounds of the night. When the clouds drop low, and the moon sets, you can’t see ten feet in a clear meadow. In the woods it’s even darker. There, you can’t even see your shoes.

Something big could grab hold of your leg, and you wouldn’t know until it was too late. Knowing that, I listened close and moved slowly as I walked down the steps and into the yard. Half expecting to see a dead animal or some other sign; a warning or perhaps a challenge.

I crept forward into the night, until I heard a rustle. It seemed to come from all around, but noises can be tricky. I looked up to the dark sky. It might be the wind, shaking the fall leaves from the trees. Or it might be something else.

After a moment, I kept moving. Every crack and pop makes you stop and listen when the predators are howling. No one wants to end up as some animal’s dinner.

I used to be the undisputed king of my property. These past five years, things are changing. Animals are taking back the night. I don’t know if it’s the chemical spills, the radiation up north, or something else. All I know is, they’re different.

They don’t back down so easy, and when they run, they only go far enough to get out of reach. Things have started vanishing, too. First it was the cat. Now the kid down the street. No one’s seen him for two weeks. Then I found a piece of shoe, out back by the creek. I showed it to Snake, but neither of us could recognize it. It was a size 14, though. Whoever he was, he was big. No one that size has gone missing that I know of, but sometimes homeless people take shelter in the woods, and when they get eaten, no one knows.

I’m gonna begin patrolling with night vision glasses and a gun. Getting a dog didn’t work. On the fifth night, I heard the noises, and all I could find the next morning was half a hind leg. So I’m down to technology. That’s the only way to level the playing field.

I wonder where it will end.

How to speak to an audience at a book event

noreply@blogger.com (John Elder Robison) — Tue, 11 Oct 2011 02:13:00 +0000

I don’t get asked many questions about being an author, or the process of writing and promoting books. This evening, a fellow writer sent me a letter, and I felt the answer might be of interest to one or two others, so I’ve posted it below . . .

This Friday I'm making my first-ever author appearance at a booksellers convention. Apparently I'm supposed to give a short reading, followed by dinner and a signing. I've never done anything like this before, and I was wondering if you could offer me some insight into how these sorts of events tend to play out. In your experience, are there aspects of being a guest presenter that are overwhelming or different from what you would have expected? Anything I should definitely do, or not do?

The first point that I would make is that you are there to entertain and engage your audience. Whatever high purpose you may have, you cannot accomplish it if you do not capture their attention by entertaining or engaging them.

A successful author/speaker leaves audiences feeling one of two ways:

This guy is really funny/entertaining – I need to read his book

This guy is really insightful – I need to read his book

Obviously, there is more to speaking than that. Your audience may go away thinking they need to change this or that in their life, or in their community, or at work . . . whatever. However, before they can form such an opinion, you must have gained their respect, and for that to happen you must have entertained or engaged them, which takes me back to that original point.

So how do you do that?

Find the two most entertaining passages in your book, and distill a reading that is at most one or one and a half pages. You may be wise to ask others what those “best passages” are, and if there are differences, select two. Work out what you say to set the scene up, and use those little passages as your reading.

Tempting as it sounds, do not read more. More = boring. As a debut author, you need to read them something so they can get a sense of who you are, in words. More than a page, though, and even the best prose gets boring when read aloud in a dinner setting. If this were your second third or fourth book, my advice would be to not read at all; just tell them stories.

When you get up to speak, thank the audience, thank the sponsor. Say a few words about your book and why you wrote it.

Read the entertaining scenes.

Thank the audience and tell them you will be available to sign books and answer questions out front.

Do the whole think smoothly and quickly, and don’t use a prepared script.

Stand in front of the audience, not behind a podium. If you don’t have a script, and you are fully dressed, why would you need one?

At the dinner . . .

People will ask you questions, which you should try and answer. Remember, anyone with a question has made a special effort to seek you out. No one put them up to it. Consequently, they are going to be predisposed to be friendly and you should not be afraid to answer. Also, these people are your partners in selling books, so they deserve your best thought. Give it to them.

When it comes to signing books, I will tell you what I learned from Steve Ross, the president and publisher of Crown when they bought Look Me in the Eye . . .

Books should be signed on the inside title page. That is the page that has the book’s title. It’s usually the second or third right side page inside the front cover. Don’t sign the blank page just inside the cover.

Develop and practice a signature you can do quickly and consistently. Ideally, it should be different from the signature you use on checks. I use my initials, not my whole name.

Get a pen that you like, and keep control of it. If you don’t have a pen, people will hand you any weird thing they have, and signing will be erratic and uncomfortable. I use a Montblanc rollerball in black. By using the same pen, I can go back and personalize a book I signed earlier, and it all looks the same.

You will occasionally be asked to sign shirts or bags. You need a Sharpie Permanent Fine Point for that task. It’s good to have one of them too.

In closing, I’ll just repeat one important point. When you speak at an author event, every person in the audience has chosen to come hear you talk. There were plenty of other places they could be, and they chose to come hear you.

If you believe that, you know you have a duty to give them your very best.

Having made that effort to come see you, the audience is going to be friendly, so you have nothing to fear from getting up there and talking.

Do not swear to excess, and do not spit from the stage. If members of the audience throw eggs, it’s ok to throw them back, but do not throw rocks. If they throw rocks, retreat through the rear.

Best wishes

John

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

noreply@blogger.com (John Elder Robison) — Fri, 30 Sep 2011 17:01:00 +0000

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

noreply@blogger.com (John Elder Robison) — Fri, 30 Sep 2011 16:47:00 +0000

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

647-678-3032"

A walk through the casino

noreply@blogger.com (John Elder Robison) — Thu, 29 Sep 2011 22:44:00 +0000

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

A Surplus of Males

noreply@blogger.com (John Elder Robison) — Wed, 28 Sep 2011 03:25:00 +0000

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.

Images of the Big E, New England's Carnival

noreply@blogger.com (John Elder Robison) — Wed, 21 Sep 2011 11:46:00 +0000

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

Greetings from Western Australia

noreply@blogger.com (John Elder Robison) — Tue, 06 Sep 2011 06:25:00 +0000

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.

Woof!

A visit to Melbourne Australia

noreply@blogger.com (John Elder Robison) — Thu, 01 Sep 2011 02:31:00 +0000

One of the most remarkable things about this new writing career is that it's taken me all over the world. My books are sold in over sixty countries, and I am now getting invitations to follow them. These next two weeks I am in Australia, at the Melbourne Writer's Festival, the University of Western Australia, and the Brisbane Writer's Festival.

I hope to see some of my Australian friends on this trip. For those of you who are far away, here are some images of my travels.

It's a most amazing journey. Thank you all for joining me, welcoming me, and making it possible.

This is Melbourne at night:

Here are some images of the historic sailing ship Polly Woodside, at anchor in the Yarra River

I never knew my long lost cousin Zebediah Robison went to Australia and set up a boiler factory. We thought that animal ate him. He must have got away.

The city, as seen from the river

They tell me you could walk across this river twenty years ago. They need to get some more fill in there now, because this is not enough debris to support my weight.

Trolley riders look the same all over, lost in their thoughts

Twelve tracks lead out of the Melbourne passenger station

You see some unusual vehicles on the street here. Also, they drive on the wrong side.

The Sofitel is famed worldwide for the floor to ceiling windows in its bathrooms. The have not heard of that Strauss Kuhn fellow down here, I guess

Ships at anchor in the harbor

Me, in a mirror and a hall

Flooding from Hurricane Irene

noreply@blogger.com (John Elder Robison) — Mon, 29 Aug 2011 01:39:00 +0000

Some images of flooding as Hurricane Irene hammers Western Massachusetts with rain last night and today

Ten Days in Australia

noreply@blogger.com (John Elder Robison) — Fri, 26 Aug 2011 02:24:00 +0000

A scene from Travels With My Dad, fifty years ago in Kodachrome. Somewhere in the Western United States . . . .

I am pleased to present my schedule for Australia, beginning next week. I've corresponded with so many of you via email, FB and a blogger over the years. I'm looking forward to seeing some of you in person.

Thursday 1 September 2011 - Melbourne

9:15 AM Interview - Radio National Life Matters (live)

11:00 AM Interview - Radio Australia (taped)

1:00 PM Interview - Qantas Up & Away Radio (taped)

7:00 PM Melbourne Writer’s Festival Author Reception

North Fitzroy Star Corner Newry Street and St Georges Road N Fitzroy

Friday 2 September 2011 - Melbourne

9:30 AM Interview - The Circle

11:00 AM Network Ten

2:00 PM Interview - Radio 4BC

2:30 PM 4BC Radio 77 Southgate Avenue Cannon Hill QLD 4170

9:00 PM MWF Event - Friday Night Live

10:30 PM BMW Edge Cnr Swanston and Flinders St Melbourne VIC 3000

The Festival’s Late Show, hosted by the peerless Julia Zemiro (RocKwiz) in Letterman mode. Live music, festival guests, no safety net. Tonight, Julia’s joined by Lynda La Plante, John Elder Robison, Simone Felice, Rachel DeWoskin and Casey Bennetto.

Saturday 3 September 2011 - Melbourne

2:30 PM MWF Event - Writing from the Autism Spectrum

ACMI Cinema 1, Federation Square, Cnr Flinders and Swanston Streets, Melbourne VIC

Sunday 4 September 2011 - Melbourne

4:00 PM MWF Event - In Conversation: John Elder Robison

The Cube, Federation Square, Cnr Flinders and Swanston Streets, Melbourne VIC

Tuesday 6 September 2011 - Perth

9:00 AM Interview - 720 ABC Afternoon Program in Perth

7:00 PM University of Western Australia Event - Be Different: adventures of a free-range Aspergian

Venue: UWA Extension - University Club, Stirling Highway, Crawley, Perth WA 6009

Link for booking tickets: http://uwa.interticket.com/info.php?event=286

Thursday 8 September 2011 - Brisbane

7:00 PM Brisbane Writers Festival - Festival First Night (Optional)

Auditorium 1, State Library of Queensland

Festival First Night includes the Official Opening by The Minister for Finance, Natural Resources and the Arts, Rachel Nolan; Opening Address by Ann Patchett; and performances by Shane Koyczan and Voices of Birralee - Birralee Blokes.

Friday 9 September 2011 - Brisbane

11:00 AM BWF Event - Aspergers: Difference and Disability

Venue: Auditorium 2, State Library of Queensland

Panellists: John Elder Robison Chair: Guy Coaldrake Description: John Elder Robison, a guy with Asperger’s syndrome, shares entertaining and meaningful stories about learning to cope with problems. He demonstrates that many Aspergians possess unique gifts and emerge from the shadow of disability to lead full lives.

Saturday 10 September 2011 - Brisbane

1:00 PM BWF Event - God Bless Humanity!

Venue: Breezeway, Maiwar Green

Chair: Krissy Kneen Panellists: John Elder Robison, Cathrine Ann, Dave Bidini Description: John Elder Robison and Cathrine Ann transformed their own lives to become ‘seemingly’ normal and successful. Dave Bidini knows the power of sport to transform lives. These three writers discuss humanity at its best with Krissy Kneen.

Autism in theFamily - more common than we thought

noreply@blogger.com (John Elder Robison) — Mon, 15 Aug 2011 16:04:00 +0000

This morning I read a striking a new study which addressed the question of autism in siblings – how common is it? The findings will be of vital interest to many; most especially young families with an autistic infant.

Earlier studies and “conventional wisdom” suggested the incidence of autism in siblings was in the 3-10% range. This new study shows those numbers to be very far from the mark.

Scientists in this new study found autism in 19 percent of the younger siblings. High as that seems the incidence is even higher in families with two or more autistic kids. In that case, a new sibling’s chances of being autistic rose to more than 32 percent.

Being a boy makes a difference too. “Only” 9% of girl siblings were autistic, as compared to 26% of boys. I found this difference quite interesting because I often wonder if autism is under-diagnosed in females. In this study, all the kids were screened with the gold-standard ADOS or ADIR tests prior to age three. So even with top-notch screening, we still have more autistic boys.

Those are some strikingly high percentages. As high as they are, and knowing autism is a spectrum condition, I have to wonder how many non-diagnosed siblings will eventually turn out to have less severe but still noticeable “differences.”

There were a few more points I found interesting. First of all, the IQ of the child did not predict anything. Neither did severity of autism, as defined by the ADOS diagnostic scales. So your odds of having a second autistic kid are higher, but those odds and knowledge of the first kid don’t combine to give any insight into how a second kid might end up.

The conclusion is inescapable: autism does run in families. According to these findings, the more autistic kids you have, the more you are likely to keep having.

We talk about autism having both genetic and environmental components. This study, with 664 infants distributed all over the country, shows a very powerful genetic component. That certainly does not diminish the role of environment, but it’s sobering.

I predict the results of this study will have a profound impact on family planning, because it casts parents’ chances of having a second or third child with autism in a strikingly different light that any previous study.

We already know (from other studies) that many parents stop having children when their first child receives an ASD diagnosis. This new finding may significantly reinforce that tendency.

Read the study yourself at this link

The study involved 664 infants from 12 U.S. and Canadian sites, evaluated as early as 6 months of age and followed until age 36 months. Kids with previously identified autism-related genetic factors such as Fragile X were excluded from the study group

“It's important to recognize that these are estimates that are averaged across all of the families. So, for some families, the risk will be greater than 18.7 percent, and for other families it would be less than 18.7 percent,” said Sally Ozonoff, Ph.D., professor of psychiatry and behavioral sciences at the MIND Institute and the study's lead author. “At the present time, unfortunately, we do not know how to estimate an individual family's actual risk.”

This study was based on data from the Autism Speaks High Risk Baby Siblings Research Consortium (BSRC) and led by investigators from the UC Davis MIND Institute.

Your correspondent (John Elder Robison) is a member of the Science Board of Autism Speaks, one of the organizations who funded the work.

Discrimination

noreply@blogger.com (John Elder Robison) — Fri, 24 Jun 2011 03:17:00 +0000

The continuing discussion about my thoughts on discrimination and accommodation got me to thinking . . .

I am absolutely in favor of laws that make it illegal to fire people for being gay, Jewish, black, or anything else except incompetent. That’s discrimination, and it’s wrong.

I do my best to live that way, myself. That means I do my best to treat every person who walks in the door of my company the same way, regardless of race, religion, sexual orientation, or whatever. I really don’t care about those things. If someone is nice, I try to be nice. If they are nasty, I throw them out.

I suspect my own Asperger’s makes me oblivious to many of the differences in people that are allegedly the basis for discrimination elsewhere. Therefore it would be more accurate to say I have no idea if a person is gay or straight (unless they say so) than it would be to say I treated them the same because they were one way or the other. However, I don’t know if I would be any different even if I knew. The differences ethnic/racial/sexual differences others may remark on generally do not matter much to me.

But that’s just me. I think other people have a right to their opinions, even if I disagree with them.

For example, I also believe in an employer’s right to let someone go if he does not fit in with that person’s team. That, to me, is the essence of what we call employment at will, a management tenant which prevails in the USA. In a small group, everyone has to fit together, and you inevitably have situations where one person does not fit, even though they may be technically competent.

I don’t think it’s wrong to let someone go, in that circumstance. My company is small, with a dozen employees. One person with a bad attitude can drag everyone down in a little place, and I think it’s wrong to force us to tolerate the person.

So what if the reason the person doesn’t fit is that they have autism? That makes it a hard question. I don’t know if a blanket answer for that circumstance exists, at least for me.

Being a large white heterosexual male, I am (at least superficially) one of the least likely sorts to suffer discrimination. The only time I really felt discriminated against was when I worked briefly in a Japanese-run company, where it was made abundantly clear that people like me were lesser animals. Finding that attitude among engineers was shocking at the time, but I know many other folks experience the same thing every day.

So what did I do? I left.

Could I have been discriminated against because my Asperger's caused me to act in unexpected ways, and I was therefore excluded from a group I might otherwise have been welcomed into? Sure, that has undoubtedly happened, but I would not necessarily even know. If they didn't want me, that is enough for me. I don't want to be there either. I am very sensitive to that.

As much as I favor laws against discrimination, I am realistic enough to know laws don’t change how people feel. If my co-workers don’t like me for some reason, I have never been inclined to force my fit in an organization. I don’t want to be where I am not wanted.

I feel like fighting discrimination often places the fighter in the role of being a victim. That is the essence of the thing . . . someone done me wrong, and I want to change the world so they cannot do it again. In that role, one is powerless, and hoping to gain power. While discrimination fighters have accomplished great things, I feel like I want to act in a more immediately positive way in my own life. That means I support the fight against discrimination but I choose a path where I am accepted, because that make me feel ok right now.

In my world view, when someone does me wrong, I change the circumstances of my life so they cannot do it again. My focus is on me, and what I can change in myself or my life circumstances. Those are the only things really under my control

When I express this view, some autistic people say it’s easy for me, because I have always been able to find work. That’s true. I am lucky that way. What do I say to someone who stays in a job where they are disliked for being who they are, yet they are terrified they cannot find another job?

I don’t know what to say to that. I have always been so stubborn that I have not been able to stay. Even when I had no place to land, I always jumped. I did that in music, cars, electronics jobs, and even publishing. It’s always worked. By worked, I mean I have always been able to find a new and better direction.

One consequence of my recent essays is that I’ve been criticized for suggesting that people in a minority group (like autistics, 1% of the population) are more likely to achieve success in nypical society if they make certain changes to fit in.

I think I’ve made it clear how we may change to fit in while still being true to ourselves and out values.

That does not mean I think society should not be more accepting. Of course I favor greater acceptance. I’m just trying to be realistic. I can’t make other people change. I can only change myself. So that’s what I advocate.

I’d be interested in other views on this.

Accomodation

noreply@blogger.com (John Elder Robison) — Thu, 16 Jun 2011 15:24:00 +0000

Should we change, or should others change for us? Should workplaces change for us?

We (by we, I mean anyone) must be able to present ourselves in such a way that the people we engage think we are nice/interesting/capable or whatever they need to continue the interaction. If we fail to do that, we will not move forward in a relationship with that person. That may mean we don’t make a friend, or we don’t get a job, or we don’t get admitted to a school. Whatever it is, it’s a lost opportunity.

Obviously no one can succeed with every engagement of another person, but each of us must look at our total tries, and our success rate. If the success rate is low, we have to ask ourselves why.

In my last post, I talked briefly about Asperger people who fail to get jobs for whatever reason, and then allege discrimination. Some neurodiversity voices ask for an end to that discrimination, and for greater acceptance.

I have asked for greater acceptance myself. I think that is a noble goal, but not one we will see attained anytime soon. When I look at how I was treated in childhood, how my 21-year old son grew up, and what I see today I see some change but not much. It leads me to wonder how much acceptance and accommodation we might reasonably expect.

I think what happens is that the philosophical desire for more broadminded treatment flies in the face of evolutionary human development. We have thousands of years of experience that tells us a person acting a certain way is a bad person; a threat. We are conditioned to reject people who exhibit those behaviors. What are those behaviors, you ask? There is no single, simple answer. We just seem to be programmed to pick up certain unspoken cues and interpret them that way.

The problem folks like me have is that our Asperger’s causes us to exhibit innocent but non standard behaviors that get interpreted as bad. I’ve written on this before, urging people to think twice when a person says or does something unexpected. I think that works in some situations, especially with people who are exposed to kids with differences or AS in the family. For the great majority of people, though, the message does not get through or it gets ignored.

That’s why I say we are 1% of the population and we can’t expect the other 99% to change for us. Laudable as the goal of change may be, they just don’t care. Note than I am not saying the 99% are normal and we are abnormal. I understand the 99% have many issues of their own. I’m just observing that the odds are stacked very heavily against us, when it comes to getting them to change in all their collective diversity, indifference, ignorance, and whatever else.

What about discrimination? I won’t say there are not people who discriminate against autistic people. I’m sure there are. That said, when we fail to get a job or make a friend, I still maintain that failure usually stems from our behavior (unexpected or unacceptable), and not from arbitrary discrimination against the underlying cause (Asperger’s.)

I cannot control what other people think about “my kind.” Prejudice or discrimination is something I cannot change, and frankly, I would not want to do it for my benefit through force of law. Why? Because if someone does not want me around, that is enough. I am out of there. I am not going to stay where I am not wanted.

I want to be in control of my life. That means I work on changing my behavior as needed to fit in. I have full control of my actions, so I know success is achievable for me by that route. I don’t wait around for others to change, because that is frustrating and often unsuccessful.

What about accommodation for sensory issues? Several people asked my thoughts on that. Examples might be moving to a quieter work cubicle, or getting different lighting. I think many sensory accommodations are reasonable and doable for employers. I am absolutely in favor of any subtle changes in the workplace that make folks like us more comfortable.

At the same time, I recognize that kind of accommodation has its limits. If the accommodation would require major changes in the workplace, and that same workplace is acceptable to everyone else, I’d get a different job. But that’s just me. Through my life I have chosen to vote with my feet in situations like that. Others would fight for change and I can respect that, even though I would not do it myself.

In our society, we have chosen to let government dictate the tradeoffs by which some people are inconvenienced for the benefit of people with disabilities. An example of that would be handicap parking spaces. By having those spaces we allow those who need them to access facilities they could not otherwise visit. But the non-handicapped person who needs a space pays a price for that accommodation even as it sits unused and he has nowhere to park.

Disability rights advocates fight those battles on many fronts. I applaud their efforts and successes, but I do not wait for such accommodations to improve my own life. Since I want action now, I make my own way as best I can. That is the sometimes hard reality we all face, every day. We can hope and work for societal change, but we still have the chance to make the best of the life we have today, because today will never come again and I don't want to spend it waiting. I want to be acting.