American Magazine: November 2016

I understand that awful feeling more than
Israel knows. I wrestled with postpartum
anxiety and debilitating panic attacks after
Owen was born. For months, I could feel the
anxiety coursing through my body. It was
just as Israel describes: constantly teetering
between willing the anxiety away and spiraling,
helplessly, toward it.
The difference is, my struggles were
fleeting. “I’ve had to practice that control every
day for 27 years,” Israel says.
I glance around the busy restaurant and
ask Israel if anything about the present
environment is making her anxious.
“I can hear half of every conversation, I
hear music. I have tactile sensitivity so these
clothes are uncomfortable,” she says, tugging at
her black blazer. “And the tails from the lights
are distracting.”
It wasn’t until she enrolled at the
Washington College of Law that Israel says
she “learned to gain rigid control over my
emotions. Lawyers have to be unflappable—
that training helped a lot.” Law school, which
marked the first academic challenge of her
life, also forced Israel to confront her difficulty
with interpersonal communication.
“I can write any legal brief, no problem.
But I wasn’t sure about the heavy social
aspects of law school. I built up such fear
about working with people directly, but I
had to overcome it in order to be an effective
advocate,” says Israel, who participated in
WCL’s Disability Rights Law Clinic.
In ASAN, a nonprofit created in 2006 by
and for people on the spectrum, Israel has
found a supportive group of (more) likeminded
colleagues—and a mission. “We seek
to make the voice of autistic people heard in
the halls of power . . . and to create a world
where there’s more than one kind of ‘normal.’”
I ask Israel about her proudest
accomplishment.
“My life,” she says. “People with disabilities
are born into a world where the deck is stacked
against them. We are discriminated against and
marginalized from social and public life. Being a
bar-certified attorney, working for an advocacy
organization with a mission I care about, having
wonderful friends and loving family, living well
and on my own—I’m very proud of that.”
Owen began ABA therapy in January
2016. The first morning that we arrived at
school to see a therapist waiting for us, I knew
ABA was the best thing we could have done
for him (and for ourselves). For six months, it
had felt like we were throwing our son into the
deep end of a pool. Now, he had an advocate, a
guide by his side for 25 hours a week.
The first successful use of ABA methods
for children with autism was in 1967; today, it’s
the most recommended, scientifically-proven
treatment for kids on the spectrum. ABA is an
intensive, structured, and data-driven program.
Therapists help children practice a skill, then
reward correct responses and positive behavior
and redirect or ignore undesirable behavior.
For example, now that Owen has learned to
refuse politely, he is praised—and his request
honored—when he says “no thank you” but
ignored when he screams “no!”
Once a month I meet with Owen’s clinical
coordinator, who goes through charts and
graphs documenting his progress around
everything from sharing and following
instructions to hand washing, classroom
participation, and temper tantrums. A spike
in the chart indicates a bad day—but spikes
are fewer and farther between these days.
I used to fret that Owen’s behavior would
inhibit his ability to learn; those worries
aren’t completely assuaged, but they are
lessened. Through ABA, Owen has learned
to ask for space instead of screaming or
hitting (although hitting remains a concern);
he’s starting to hold short conversations
about topics other than firetrucks; he’s not
only joining circle time, he’s participating;
ABA is incredibly effective but it can also
be expensive. Even if it’s covered by private
health insurance, which isn’t a given (coverage
depends on the laws of the state in which
the policy is written; Maryland requires ABA
benefits, for example, while DC does not),
families still have to contend with expensive
copays or coinsurance and deductibles. Daily
copays can add up to $700 a month.
According to Marley Rave of Autism Speaks,
the disorder costs families $60,000 per year in
medical care, special education, lost parental
productivity, and more. (Last year, costs
topped $268 billion in the United States alone.)
However, a 2012 study by researchers at the
University of Pennsylvania found that the cost
of intensive early intervention like ABA “more
than pays for itself in terms of reduced needs
for therapy and educational support by the
time a child reaches high school.”
Says Rave: “I’ve had the opportunity in
this job to meet so many different families
and parents who are doing the best they can,
but they deserve to have an easier road. It’s
our responsibility to help parents give their
kids the best quality of life possible, without
bankrupting them.”
It’s early August and I’m at a café in
Tenleytown, waiting on Sean (not his real
name), an AU student who’s agreed to talk to
me about his ASD diagnosis. I have no idea
what to expect—how much he’ll want to share,
“Owen might not have been the
child I expected, but I thank my
lucky stars that he’s the one I got.”
and he’s practicing calming strategies when
he gets upset. The yellow blanket that he
used to drag around like Linus from Peanuts
is now gone.
I’m in awe of his therapists: two wonderful,
20-something young women who don’t yet
have kids themselves, but know how to reach
my child in ways that Sam and I never could.
They are warm, kind, and infinitely patient—
but I know it’s Owen who’s doing the heavy
lifting. He will never be completely at ease in
social situations, but he’s learning how to
navigate them. I never forget all the hard work
behind every data point on his charts.
or how much he’ll trust a person he just met
with his story.
Sean describes years of psychologists
layering one diagnosis on top of another, until
they settled on a combination that best describes
his nuanced symptoms: ADD, Asperger’s, and
executive function disorder, which hinders
his ability to manage time, switch focus, and
organize. In high school, he also wrestled with
depression and suicidal thoughts.
When he enrolled at AU, Sean, disclosed his
diagnoses to the Academic Support and Access
Center, entitling him to legally-mandated
accommodations, including extra time for
22 AMERICAN MAGAZINE NOVEMBER 2016