Vim & Vigor - Spring 2020 - UVA - 56

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UVA. Like Painter, most of the family
navigators have a child with autism.
These roles are part of a major initiative to improve the lives of people with
autism through research, intervention and
training. Known as STAR, or Supporting
Transformative Autism Research, the initiative is led by the UVA Curry School of
Education and Human Development in
partnership with colleagues across UVA,
UVA Health and the broader community. In
its first year, STAR has started more than 20
research studies and community workshops
focused on autism. (See sidebar at right.)

Not Defined by Autism

Painter remembers going through a mix of
emotions in 2000 when autism came into
her life. "I majored in psychology in college,
so I knew the word autism," she says, "but
I had no idea that it was a spectrum. I only
knew the stereotypical image of people who
couldn't speak at all. Adam could speak."
After spending a weekend researching
autism, Painter discovered her toddler fit
many of the criteria. Two days later, she and
her husband got a definitive diagnosis. "I did
a lot of grieving," she recalls. "I was just crying and beside myself that whole weekend.
You go through all of those stages of coping
with loss. You feel worry, shock, denial and
anger. A wonderful trainer at VIA gave me
excellent advice. She said, 'You go through
these emotions, but the best thing for your
child is for you to cry at night but during the

day stay focused on getting him the interventions he needs. Don't let your feelings
stop you, and don't get stuck in something
unhelpful like denial.' "
Growing up, Blalock knew he was different from other kids, but not because
of autism. "I attributed it to being raised
differently," he says. "I wasn't into a lot of
the same games and hobbies as some of my
peers. Even in my group of best friends, I
felt sort of like the outcast, and I couldn't
always follow their conversation." When he
moved onto campus for college, he found
friends through a club of fellow avid video
game players, and he still stays connected
to them through internet chats.
He never mentioned autism to anyone,
but he did let his professors know: "I may
not look like I'm paying attention, but I am."
(A lack of eye contact is a hallmark of autism
but doesn't mean a person with autism isn't
engaged socially.) "Ironically, not looking
someone in the eye may actually mean that
they are trying very hard to pay attention
and to participate in the conversation, even
though it can get interpreted in the opposite
way," notes Vikram Jaswal, UVA associate
professor of psychology. Jaswal co-authored
a paper in the journal Behavioral and Brain
Sciences that offers alternative explanations
for lack of eye contact and other behaviors
common among people with autism.
Learn more at uvahealth.com/
autism-misconceptions. *

Portions of this article adapted from UVA Today article by Laura Hoxworth.

Earlier Diagnosis, Better Outcomes
Autism spectrum disorder (ASD) can be diagnosed definitively by
age 2, but some children, particularly girls and children in rural areas,
fall through the cracks and miss out on interventions that are most
effective when started at a young age. University of Virginia is working on
many fronts to change this through the STAR (Supporting Transformative
Autism Research) initiative and the Brain Institute. Here's how:
Two family resource navigators will serve pediatric offices in rural
Virginia to connect people diagnosed with ASD with community resources.

Micah Mazurek

Four times more boys than girls are diagnosed with ASD. A lack of information about
autism's manifestation in girls means many are never diagnosed and miss out on beneficial
interventions. Learn more about research that hopes to shed light on the best interventions
for boys and girls. Visit uvahealth.com/autism-gender.

SPRING 2020 VIGOR VIM & VIGOR

Uneventful dental visits. People
with autism typically struggle with
processing sensory information such
as bright lights and loud noises.
Visits to the dentist are particularly
challenging, making oral health a
growing issue.
The STAR (Supporting Transformative
Autism Research) initiative is leading
a research project that involves simulated dental visits to help people
with autism slowly build the skills
they need for safe and uneventful
dental checkups.
Better emergency encounters.

People with autism are nearly seven
times more likely than the general
population to encounter emergency
responders. Sirens, flashing lights and
strangers coming into the home and
asking questions can be a sensory
nightmare and lead to communication
breakdowns for a population that has
inherent communication difficulties.
In spring 2019, the STAR team
helped train members of the
Charlottesville-Albemarle Rescue
Squad on how to identify someone
with autism, make the situation
more predictable and decrease
sensory triggers.

Promoting water safety.

Drowning is the No. 2 cause of preventable death for people with autism.
"We know that people with autism
tend to be more attracted to bodies
of water, but they don't always learn
water safety skills or how to swim
because it can be a pretty challenging task to teach someone to swim
who has communication challenges,"
explains Rose Nevill, director of STAR's
Autism Research Core.
Last summer, the STAR team
started a research project to train
YMCA and Fry's Spring Beach Club
swim instructors on behavioral
skills training. The instructors then
taught key skills to participants
with autism. Data from this study
will help researchers determine
whether similar training could be
standardized and widely disseminated. "In order to be effective
autism researchers," Nevill says,
"we really need to be responding
to the community's needs."

PHOTO BY DAN ADDISON

Families wait on average three years between noticing signs of autism and receiving a
diagnosis. This nationwide issue results in critical delays in getting intervention and support,
notes Micah Mazurek, a UVA psychologist. As principal investigator of the STAR initiative,
Mazurek is leading a program to train primary care providers to recognize and accurately
diagnose autism in young children. Learn more at uvahealth.com/autism-diagnosis.

UVA-Led Initiative
Addresses Crucial
Needs in Local Autism
Community

http://www.uvahealth.com/autism-misconceptions http://www.uvahealth.com/autism-misconceptions http://www.uvahealth.com/autism-diagnosis http://www.uvahealth.com/autism-gender

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