American Magazine: November 2016

escalators or ceiling fans, for example—and
have difficulty sleeping and eating. Although
40 percent of those with ASD have average
to above-average intelligence and some are
gifted mathematicians or musicians, Dustin
Hoffman’s autistic savant in the 1988 movie
Rain Man is the exception, not the rule.
“The neural story for autism is
extraordinarily complex,” says psychology
professor Catherine Stoodley, principal
investigator for AU’s Developmental
Neuroscience Lab. “More differences exist
between autistic brains than between
[neurotypical] ones.” However, the
cerebellum—located at the base of the brain
and home to half of its neurons—shows
remarkably consistent signs of abnormality
among those on the spectrum.
The cerebellum plays an important role in
motor control, movement-related functions,
and cognitive functions, including social
cognition and language—which is the focus
of Stoodley’s research, funded by a three-year
grant from the National Institutes of Health.
“The goal is to better understand how the
[autistic] brain is working so we can capitalize
on strengths and improve the parts that aren’t
functioning as well,” Stoodley says. But “there
are no easy answers, no quick answers,” given
autism’s broad spectrum. “If you look at the
population we’re studying, IQs might range
from 120 down to 70 or lower. Behaviors
are so different and so complex, they can be
difficult to unravel.”
Debate over autism’s growing prevalence
is akin to the chicken-and-egg argument.
Many believe that a broader definition of
ASD and more finely-tuned diagnostic efforts
have helped to identify more people on the
spectrum. However, as the CDC states on its
website, “a true increase in the number of
people with ASD cannot be ruled out.”
There is no cure and no known cause,
although DNA plays a big role. Nongenetic
or environmental factors that influence
early brain development don’t cause ASD by
themselves, but they can increase a child’s
risk of autism. Advanced parental age is a risk
factor, as are prematurity and low birth weight.
Kids are often diagnosed with autism
at three or four years old, which is around
the same time they receive immunizations.
But correlation is not causation. “At Autism
Speaks, we still receive questions regarding
vaccines, but as an organization dedicated
first and foremost to science and research,
we go off of the research, which clearly shows
vaccines don’t cause autism,” says Marley
Rave, SPA/MPA ’13, national director of major
giving at the nonprofit’s DC office. The CDC
and World Health Organization have also
dismissed any causal relationship between
immunizations and ASD.
Wandering is a major safety concern within
the ASD community. According to Rave, 50
percent of kids with ASD (my son included)
wander, bolt, or elope—a rate nearly four
times that of neurotypical youngsters. More
than one-third of children with ASD are never
or rarely able to communicate their name,
address, or phone number, according to the
National Autism Association. Many are fearful
of police and emergency workers, who often
lack the training to effectively identify and
communicate with people on the spectrum.
We saw this play out (literally, on cell phone
video) in North Miami, Florida, in July, when
police shot a behavioral therapist who was
trying to calm his 27-year-old autistic client.
The young man had wandered from his
assisted living facility and was sitting in the
middle of the street, clutching a toy truck, and
screaming at his therapist to “shut up,” which
officers took as a threat. Police admitted they
made a mistake by shooting the therapist—they
were aiming for the autistic man.
“If your child was just diagnosed, you
might need some time to get used to the idea.
Take a few days. Cry, moan, scream, bitch,
blame your spouse’s family—do whatever you
need to for a little while. A very little while.
Then roll up your sleeves and get to work.”
When I got to this line in Lynn Kern Koegel
and Claire LaZebnik’s Overcoming Autism, I
laughed out loud. Just a few nights before, Sam
and I had angrily shaken the branches of one
another’s family trees. It was a relief to know
the need to point fingers is completely normal.
Autism had inserted itself into our lives
overnight. It was surreal, discombobulating,
and exhausting. It was all we could talk about,
all I could think about. On particularly bad
days, I would slip into the bathroom at work
for a quick cry. I have always looked at my
child and thought: He will be successful, he
will love and be loved, he will be happy. Those
three letters—A-S-D—rocked my foundation.
Fall 2015 was a whirlwind of appointments.
In addition to seeing doctors through our
insurance provider, Owen was evaluated by
Child Find and referred to Developmental
Education Services for Children (DESC) in
Montgomery County, Maryland, where we live.
The process was incredibly illuminating. We
learned that Owen has sensory processing issues
(he gets overwhelmed and anxious in a loud
restaurant or in a chaotic classroom) and poor
gross and fine motor skills, which is common
among kids with ASD. We also discovered that
Owen’s severe gastrointestinal problems, which
began plaguing him at three months old, were
probably the earliest sign of autism.
The DESC evaluation gave us our first
real glimpse of Owen’s days at school. “Owen
sometimes stopped playing and looked lost
in thought as he played with the fringe on his
blanket,” the psychologist wrote.
My heart ached. But when the official
diagnosis of ASD came on October 22, 2015,
there were no tears—there was only relief and
an overwhelming sense of determination to do
everything in my power to help my son. “This
is the low point,” the doctor told Sam and me.
“It will only get better from here.”
When Tracey Staley, Kogod/BSBA ’84,
learned of her son Jeff’s diagnosis in 2000,
her first thought was: what’s Asperger’s?
Staley was working at a tech company at
the time of six-year-old Jeff’s diagnosis and
began reading up on Asperger’s, a highfunctioning
form of autism first identified by
Austrian pediatrician Hans Asperger in 1944.
“I realized, ‘Hey, I know a lot of people like
this,’” she says. “There was a sense of relief
that we finally knew what was going on.”
A gifted little boy who loved trains, Jeff
developed normally, but Staley and her husband
Mike noticed that he would get overwhelmed by
loud noises. Once in first grade, Jeff disappeared
from the cafeteria; panicked teachers later
found him in the classroom, enjoying his lunch
in blissful silence.
Jeff’s tendency to be literal attracted
bullies who teased him about “ants in the
pants” or, worse yet, “liar, liar, pants on
fire.” (According to the National Autism
Association, 65 percent of autistic kids are
bullied by their peers.) Eventually, things
began to even out when Jeff, who was also
diagnosed with Attention Deficit Disorder
(ADD), enrolled in a program for Asperger’s
students in third grade.
Good teachers and a principal who “got
it” made all the difference, as did the right
20 AMERICAN MAGAZINE NOVEMBER 2016