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.
by Lou Schuler, Men's Health
For more articles like this
visit
https://www.bridges4kids.org.
"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 Encyclopedia 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. (See "Standard
Deviations," below.)
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.
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