American Magazine: November 2016

psychologist and cocktail of medications. “I’m
now confident that he will have a successful
life,” says Staley, who sits on the boards
of the Autism Society of America and the
Autism Society of Pittsburgh, where she and
Mike live. “But I don’t know that I could’ve
said that a few years ago.”
Although the Staleys always knew their
son was smart, they weren’t sure if college
was in the cards. Of those with a disability,
people on the spectrum are the least likely to
attend college, according to a study published
in the June 2012 issue of Pediatrics journal.
Only one-third go to college, with the majority
of them (81 percent) matriculating to a fouryear
institution from community college.
Jeff defied the statistics. The 23-year-old
is now an information technology major at
Marshall University’s College Program for
Students with Autism Spectrum Disorder,
which offers support around academics, social
skills, and independent living. If students
miss class, their grad student mentors come
knocking; if they ask too many questions in
class, they might be given a per-lecture-limit.
Marshall’s program, established just 14
years ago, is the oldest of its kind on a US
college campus.
people; I never thought he’d be able to do
that,” Staley says. “It was a reminder that you
always have to look for opportunities for your
child to shine.”
The doctor was half right when he
told us things would get better. They would,
but not immediately.
An official diagnosis of ASD meant we
could begin pursuing Applied Behavior
Analysis (ABA) therapy. We also had an
Individualized Education Program (IEP) in
place with Montgomery County that entitled
Owen to weekly sessions with occupational
and physical therapists and a special educator.
The only problem: None of the services
would kick in until January 2016 and Owen’s
daycare situation was growing more volatile
by the day.
He screamed in the morning when he
realized it was a school day. He screamed when
I dropped him off. He screamed at daycare—so
much so that I was certain we were going to be
asked to leave. I started using the back door so
I could stay out of the director’s line of sight.
She had already told us that four parents had
complained about Owen’s outbursts; that made
“It’s like getting oxygen on the airplane:
you have to put your mask on first
before you can help your kid. If you pass
out, you’re no good to your child.”
Now a junior at the West Virginia school,
Jeff is thriving. Even his struggles are
victories of a sort. “He discovered a social
life,” laughs Staley. “That got the best of him
for a while.” Still Staley, who works in human
resources, worries about the budding video
game designer. Can he sell himself in an
interview? Can he stay focused when work,
inevitably, becomes a grind? “In life—and at
work, especially—you don’t always get to do
things that you love.”
Despite Staley’s worries, she’s learned
never to underestimate her son.
Last year, the Autism Society invited Jeff
to speak at its annual conference in New
Orleans, alongside NeuroTribes author Steve
Silberman. “He spoke in front of 150 or 200
—clinical psychologist Darren Sush
me feel even more alienated from the other
moms and dads, who looked at us with a mix
of disdain and pity.
When I picked him up, I would get a full
report of Owen’s misdeeds from both the
teachers and the kids, which was particularly
brutal. (“Owie made me cry today.”) As an
editor, I always begin my critique of a writer’s
work by pointing out something positive; I
was desperate for someone at Owen’s school
to do the same. Yes, I need to hear about the
outbursts. But can you also tell me about that
awesome Lego tower he erected? Or how he
puffed with pride when you asked him to be
line leader?
The last three months of 2015 were among
the hardest of my life. All three of us were
stressed; our unhappiness was palpable. A
doctor once told Sam and me that it’s not
Owen who is challenging. Rather, we are
challenged as parents to adapt, to accept our
son for everything he is and everything he
might never be. At the time, though, I felt
challenged just to get through the day.
According to Los Angeles-based clinical
psychologist Darren Sush, CAS/BA ’01,
CAS/MA ’03, parenting a special needs
child exacerbates everyday stresses. “Being
a parent in and of itself is difficult. But the
instruction manual for parents of kids with
autism is completely different. Unfortunately,
those challenges are often pushed to the side
because there’s no time, there’s no money,
there’s a guilt that comes with taking a
moment for yourself.”
A 2014 study by researchers at the
University of Illinois found that 32 percent
of mothers of children on the spectrum
experienced moderate to severe levels of
depression, compared to 18 percent of women
with neurotypical youngsters. The trend holds
true for fathers of kids with ASD, as well.
“If parents are feeling a bit depressed,
they’re less likely to participate in their
kids’ lives, and that impacts the children’s
progress,” says Sush, who went into private
practice in 2013, working exclusively with
parents of autistic children. “It’s like getting
oxygen on the airplane: you have to put your
mask on first before you can help your kid. If
you pass out, you’re no good to your child.”
Resentful, lost, lonely, sad. That’s
how Owen’s diagnosis made me feel. It
wasn’t until I met Kelly Israel, WCL/JD ’15,
that I got some idea of what Owen might be
experiencing.
Israel, 27, was diagnosed with Asperger’s
when she was about Owen’s age. A whipsmart
little girl who lost herself in books, it
was Israel’s “tempestuous emotions” that
set her apart from the other children in her
kindergarten class. Social anxiety led to tears,
which led to outbursts that didn’t taper off
until she was in her mid-20s.
“When you have trouble controlling
your emotions, it’s a constant battle against
exhaustion,” Israel tells me over lunch near
the Autistic Self Advocacy Network (ASAN)
in downtown DC, where she works as a
policy analyst. “Low-level anxiety follows me
wherever I go.”
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