Wednesday, April 11, 2007

Lost Boys: Autism and My Son

They used to be thought of as loners, misfits, even geniuses. Now they're being labeled "autistic." But here's the scary part: The diagnosis may boil down to an excess of maleness.

''I have mutant superpowers.'' -- Harrison, 8, striking up a conversation with an employee at a sporting-goods store.

Kimberly and I stared at the child psychiatrist, not sure how to react.

His question to us—"Have you ever considered that what you have here is a perfectly normal boy?"—had been at once ridiculous, and one we wished we could have answered in the affirmative. This shrink was only the latest in a long line of evaluators, and for the few minutes the doctor saw him, Harrison could have passed for a normal, if hyperenergetic, kid.

But we knew better.

Our son, at 8 years old, is a beautiful child, with hair as red as the Encyclopaedia Britannica, blue eyes that make you wonder why people made such a fuss over that Sinatra guy, and a mischievous smile that turns his freckled cheeks into matching whoopee cushions. All this sits on a frame so gangly that, when he does his gliding walk up on the balls of his feet, you sometimes get the impression that his magnificent head is self-propelled, rather than a part of the natural apparatus.

And, yes, my wife and I would love to consider him normal.

That would mean we could occasionally hire a babysitter for him and his sisters and go out to see a movie.

That would mean we could sign him up for sports teams and summer camps and swimming lessons without making sure that a parent or aide would be with him every minute, or that the instructor had a background in special education for kids like Harrison.

That would mean every day wouldn't start with "Harrison, have you taken your medicine?" And almost every weekday afternoon wouldn't include a therapist in our home, trying to teach him how to approach people or start a conversation. And every night wouldn't end with an epic battle between his spiking energy level and our plummeting ones.

But most of all, it would mean the psychiatrist was right, that Harrison isn't autistic. That he's just a boy being a boy. Though the line between that and autism isn't always perfectly clear, it's one we know Harrison may have crossed the moment he was conceived.

We didn't have that "aha!" moment when we realized our boy was different, just a series of signs that he wasn't developing normally. Harrison didn't exhibit the speech delays that often signal autism—he's fantastically articulate—but his behavior was always behind that of other children. Kimberly, my wife, once returned home from a playdate in tears after she'd had to drag a kicking and screaming Harrison out of someone's house. Other times, she was just exhausted by his behavior, his difference, his oddness. If he wasn't making strange noises, he was flapping his arms or rolling around on the ground. Even when he did things that seemed normal, he did them apart from the other kids in the room.

Still, the first time someone dropped the A-bomb on us, we felt as if we'd been slapped.

"I think he's autistic," my younger sister blurted out during a family Christmas gathering, when Harrison was 7 weeks shy of his third birthday.

''The truth can't hurt me. I learned that myself.'' -- Harrison, 7, describing how he feels when we talk about his condition.

Christmas with the Schulers was always a free-for-all, but this year it had a different tone. Almost every adult conversation was interrupted by a kid whose report started with "Harrison took . . ." or "Harrison hit . . ." If he wasn't grabbing his cousins' toys and running away, he was knocking down their house of Lincoln Logs or screaming, "I didn't want this!" after opening a gift from his grandmother.

Kimberly and I took the label "autistic" as an insult, but my sister didn't mean it that way. She's a teacher in a public school, and she's seen her share of pathologies. Her son had been diagnosed with attention deficit disorder—ADD. We all conceded that Harrison had ADD, plus something else that his prescription Concerta—a timed-release competitor of Ritalin—didn't reach.

What that was, no one could say, although we collected our share of alphabet-soup opinions. First, when he was 4, we were told he had NLD, a nonverbal learning disorder. He had trouble with fine motor coordination, meaning that he struggled to grasp and use pencils and eating utensils. In stressful situations he didn't make eye contact with people. In his early years, he seemed to have a photographic memory—but couldn't read human facial expressions or tones of voice. On dozens of occasions, I had to get in his face and scream before he understood that I was angry with him.

Another psychiatrist gave him the label PDD-NOS: pervasive developmental disorder, not otherwise specified. I have the evaluation in front of me: "Mr. Schuler reports strange behaviors, such as when Harrison is playing with other children, he runs around in circles rather than engaging them."

But there was more than that; truly baffling stuff, like the period when he licked things (including people and pets), and the bizarre tantrums he threw whenever there was a change in routine. Finally, when Harrison was 6, a psychiatrist diagnosed him with Asperger's syndrome, a form of autism in which words and academic achievement come easily, but social interactions are virtually impossible. And that's when we finally began to understand what we were up against.

A preschool principal considered Harrison's disabilities so severe that she advised us to find a good lawyer. We were in for a lifetime of legal battles, she warned, if we wanted to get our son the services he needed. It hasn't been the legal jihad the schoolmarm predicted. But dealing with doctors, school officials, and therapists has become Kimberly's de facto full-time job. And it doesn't look as if it will come with retirement benefits.

Then there's the simple matter of keeping a kid with autism alive and healthy. We've had our share of scares, but our experiences pale compared with those of other parents of autistic kids.

"Dan was never out of our sight for more than 45 seconds before he was 5," says Mark Reuter, Ph.D., a psychologist in private practice in Tinton Falls, New Jersey, and Kimberly's uncle. His son Dan was diagnosed with autism. "He would wander off in whatever direction he was visually pulled."

Reuter tells one story that chills us every time we hear it: The family was taking a vacation when Dan was 5. He started walking away, down a beach, and Reuter followed him, staying about 25 yards behind. Dan walked in a straight line for 35 minutes, until he reached a jetty and couldn't go any farther. Then he turned around and started walking back.

"I stood still," Reuter recalls. "When he came within maybe 20 yards, he looked up, saw me, got a look of recognition on his face, and then walked right past me."

Imagine a child who would walk in a straight line for 35 minutes, with no concept of fear of strangers or detachment from his parents, and you have an idea of what life with autism is like, every day, every waking hour.

''I can be part of the civilization of Harrisons.'' -- Harrison, 6, upon learning that other children have the same first name.

If autism were a growth stock and you'd bought a few shares when it went public in 1987, you'd now be rich beyond your wildest dreams. Before that year, autism was considered a rare condition, and was usually accompanied by a degree of mental retardation.

A change in diagnostic criteria in 1987 opened the door for about a third more children to be classified or reclassified as autistic. Then, in 1994, Asperger's syndrome—a type of high-functioning autism found in people with average to above-average intelligence—was added to the Diagnostic and Statistical Manual of Mental Disorders, setting the stage for the still-rising wave of autism diagnoses.

How big a wave? In 1987, 2,778 autistic people got some assistance from the state of California. In 2002, 20,377 received services, and about 70 percent of them were 14 or younger. Right now, the Autism Society of America estimates that one in every 250 kids born is autistic, and about four of five of them are male. So I'll do the nasty math for you: About 0.64 percent of male children are autistic, or one in every 156. So if autistic kids could have buddies in the traditional sense, Harrison would have plenty—maybe 200,000 in America.

There are plenty of theories—some of them remarkably paranoid—about where the surge comes from. One common theory—that autism is a side effect of a mercury-based preservative in childhood inoculations—has been repeatedly debunked. But a 2003 study from the Boston University school of medicine might be closer to the truth. It found that as autism diagnoses have risen 25 percent per year in the United States, reports of other behavioral disorders have fallen by 20 percent. In other words, a generation ago a kid who showed academic ability but couldn't seem to control his emotions or follow rules might've been classified as having an "oppositional-defiant" disorder. A boy with an all-consuming interest in one subject—a hallmark of Asperger's—might've been given the "obsessive-compulsive" tag. (Or maybe just "hobbyist.") Today, both conditions might be lumped under the heading "autistic."

No two kids with autism are exactly alike, but all types of autism share a common trait: "We're talking about a fundamental difference in wiring," says Fred Volkmar, M.D., a child psychiatrist and autism researcher at Yale and the author of Healthcare for Children on the Autism Spectrum.

"I could be looking at a car, they could be looking at a face, and we'd be using the same parts of our brains."

Most of us, when we're looking at a face we're seeing for the first time, use a part of the brain called the fusiform gyrus to process the visual information. We use another part, the inferior temporal gyrus, to look at objects. Research done at Yale showed that autistic people tap the inferior temporal gyrus for both unfamiliar people and objects. So for a lot of autistic kids, the world is only objects. Which accounts for their failure to empathize with their peers or parents, and their difficulty making friends. If you've ever felt frustrated enough to kick the tire jack or pound your fist into the wall, you know how they feel when a person frustrates them.

There are other differences, as well. A normal brain has more bloodflow on the left side—the part that handles language and analytical tasks—than on the right, the creative and artistic side, which is also the area of the brain that stores images.

But an autistic brain has equal bloodflow on both sides, meaning that analysis is shortchanged. So an autistic boy may not be able to comprehend nuances in a conversation. Understandably, he'll also have trouble initiating a conversation. But that same boy may have perfect pitch, a photographic memory, or, in extreme cases like that of the Dustin Hoffman character in Rain Man, an ability to "see" numbers that the rest of us can't. It's a compensation, but it's paid for with a lifetime of isolation.

Bloodflow giveth, and bloodflow taketh away.

''What's the point of having a big brain if I can't use it to store a few pictures?'' -- Harrison, 8, after flexing his photographic memory.

The word "autism" was coined more or less simultaneously by two psychiatrists toward the end of World War II. Dr. Leo Kanner, a child psychiatrist at Johns Hopkins University in Baltimore, used the word to describe kids who seemed to be in their own world ("autos" is the Greek word for "self"). Dr. Hans Asperger, in Austria, used the phrase "autistic psychopathy," observing that some very intelligent, even very successful, people could be stuck inside the labyrinths of their own minds.

Dr. Asperger never met my grandfather, Frederick Schuler. But based on the little I know about Frederick, I think the two of them would've had a lot to talk about. Growing up, my siblings and I were told that Frederick had died during the Depression. We didn't learn until we were adults that he'd been alive and living in our city while we were growing up, and that he died in a mental institution in the late 1960s. Our best guess is that he'd been there a quarter century, at least.

My dad told us only that Frederick worked for railroads and that he was locked up because he memorized train schedules. There must be something more to it than that, given his line of work and all. But it's fair to assume he had Asperger's (train obsessions are a major theme with Asperger's patients, for some reason), and if my son has been accurately diagnosed, it illustrates a point that even Dr. Asperger recognized back in the 1940s: This thing runs in families.

Humans have 46 chromosomes (the two most famous being the X and Y that determine sex). These 46 chromosomes control about 30,000 genes. Out of all that, maybe five to 10 genetic mutations are involved in autism. Current thinking says that the more mutations you have, the hairier it gets.

Combine a man and woman with one or two mutations each, and all hell breaks loose genetically. When my relationship with Kimberly got serious, we both failed to see the genetic minefield we were walking into. I had told her about Frederick, and we knew about Dan, the autistic cousin on her side. But we didn't yet have a name for Frederick's condition, and Dan was so different from Harrison that it took us years to put it all together.

And by then, we'd had two more children. But they are both girls, and make eye contact just fine, thank you.

''There's no law in America that says a 7-year-old white male can't keep a dime he finds at the pool.'' -- Harrison, arguing with his sister about a coin he found.

When Harrison was born, he had abs. I don't mean a six-pack, but a defined ridge separating his obliques from the rest of his abdomen. He also had perfectly round deltoids and a visible trapezius muscle in his upper back. His quadriceps bulged on his hairless little thighs. If you didn't know better, you'd swear someone had spiked his umbilical cord with testosterone.

Which brings me to one of the newest and most intriguing theories about why autistic kids are that way. It's called the "extreme male brain" theory of autism, and it starts with an unusually high amount of testosterone before they're born.

Simon Baron-Cohen, Ph.D., is a Cambridge University psychology professor and the driving force behind the theory. He has found that children exposed to high levels of testosterone in their mother's amniotic fluid have the most trouble making eye contact and forming friendships by age 4.

When they reach manhood, men tend to be systematizers: Our brains have a tendency to organize things unemotionally, to understand events and people by creating categories for them. Women tend to be empathizers, taking other people's feelings into account when trying to analyze situations and events.

All this falls on a spectrum, with some men and women in the middle, equally capable of empathizing and systematizing.

Autistic people, on the other hand, fall way, way out on the male side, leading to the "extreme" aspect of the male-brain theory. Part of the condition leaves them unable to empathize in normal ways. The other component is a tendency toward systematizing. The highest-functioning autistic people—a group that may have included Albert Einstein and Isaac Newton, according to Baron-Cohen—can focus on narrow topics of interest. Newton, for example, got so absorbed in his work that he forgot to eat, and young Albert Einstein was known to repeat the same sentences over and over. Who better to attempt a unified theory of the universe than an obsessive systematizer?

''I just can't do it. My brain won't let me. I don't have a good brain.'' -- Harrison, 4, explaining to his grand-mother why he can't learn to propel himself on the backyard swing set, after she'd tried in vain to teach him.

You would think, with all that extra testosterone, that Harrison and other autistic kids would be athletically inclined. But in fact, the opposite is true. And his misadventures with sports illustrate perfectly why it sometimes breaks your heart to raise a boy like this.

I started this story with a quote from Harrison to an employee of a sporting-goods store. At 8 years old, my son had finally shown an interest in sports, and I'd signed him up for a local soccer team. He was exuberant that day as we tried on soccer shoes. Me, I was terrified. Harrison was sure he'd be a great soccer player, but I knew what was coming.

I was right. He was crushed after the first practice. It was clear he was the worst player on the team, and it wasn't even close. He could barely dribble and couldn't kick the ball more than a few feet. In the first game, the coach put him on the field as a defender, and the first time opposing players came toward him, he stood like a statue while they dribbled around him and scored. He shouted to me that he was tired and he just wanted to go home. I told him he was part of a team and had to keep playing.

And then something clicked. All of a sudden he understood what he was supposed to do. He started attacking the ball, sometimes kicking it away, sometimes forcing the opposing forwards toward the sidelines. Harrison attacked relentlessly. He still couldn't dribble or kick worth a damn, but he'd found a way to play the game, to contribute, to be part of the team.

Maybe the years of behavioral therapy, of dedicated professionals endlessly working with him to help him understand the give-and-take of human interaction, were paying off. Or maybe he'd just found something new to focus his intensity on. See ball. Kick ball! For the first time in his life, he was a player.

Since then, I've noticed a series of differences. I've seen him approach people and try to strike up conversations. Okay, so he scared a kid off by launching into a rant on his fear of lamprey eels. It was an attempt. Normal stuff to other parents, but to us it's the universe reordering itself.

After one soccer practice, as Harrison and I drove home in a spring downpour, I stopped at a local bank. "Dad," he said as I stepped out into the rain, "remember to put your hood up."

I pulled up the hood of my sweatshirt, ran to the ATM, ran back. "Thanks for reminding me to put up my hood. That was good advice."

He seemed to bask in the praise for a moment. "Well, thanks for thanking me."

Our solitary boy had actually focused, however briefly, on someone else's welfare.

And you know what? I'll take that. My genes may have walled him in, but now, almost every day, I see him try to scale the wall, to connect. If he goes on to lead a full and happy life, it'll be a team effort.

But there'll be no question who's the star of that team.

9 comments:

mcewen said...

Thanks for posting this during Autism Awareness Month. There are so many children out there on the spectrum, yours, mine and everyone else's. It certainly helps me to read of other parents' experiences.
Best wishes

Borne Withit said...

My 5 yearold has aspergers too. I knew something was different from an early age and was told i'm just being paranoid. Thanks for sharing your experience. Harrison sounds like a great kid. Does he have a special interest? When and how did you tell him he has aspergers? I have not told my son. When things don't make sense to him I tell him that he thinks differently. Reading about other peoples stories makes me feel more positive about AS and not feel so isolated. Although it can be tough I feel priveledged to have an aspie son-he is making me question life and illogical social ways, teaching me patience and acceptance. I could go on & on-maybe I'll start a blog on our experince. Thanks.

Courtney said...

It was so comforting to read this. Our 6 year old son has recently been diagnosed with Aspergers and also has ADHD. I can relate to your wife. It is so exhausting (as I write this at the end of a very difficult day!)

DavidinBattleCreek said...

My son has been diagnosed with PDD-NOS at age 3. Since he has language delays, he's not considered at the Asperger's level. My wife and I are part of an ASD support group here in Michigan. We have a few families with daughters with an autism spectrum disorder. I wonder how girls end up with autism.

Testosterone said...

This is indeed sad , I wasn't aware that autism could be linked to extra testosterone , I understand that testosterone can help stop memory illnesses. Thanks for posting this - regards - Dave

Testosterone said...

Also for more info on testosterone please refer to thetlab.com

Thanks.

Anonymous said...

Our son is ten years old and has Aspergers also. He seems to be defiant many times , and also OCD and high anxiety. This has been very tough, talking with him endlessly about life and rules. We are now looking for a proper school to educate him. None seem to be working out. We live in Monmouth County NJ. We toured local schools and either they are way below his intelligence, or there are too much behavior problems with the students, not that my son is always well behaved, he seems to emulate the lowest form of behavior in any classroom. Any advice.

Lisa Marshall said...

I love this story. Just love it. So much heart. My favorite Harrison lines were about the dime and the eels. Sounds a lot like my little man, HFA (high functioning autism).

I am so proud of you and Harrison - thank you so much.

Lisa Marshall - CJ's proud mom.

Anonymous said...

http://canadadrugssideeffects.blogspot.com/2008/12/levitra-side-effects.html