Getting On the
How can early diagnosis of
autism spectrum disorder and
access to care help kids on
the spectrum achieve their
potential? D
uring Maya’s* first birthday
celebration, her mother knew
something was different.

“We were singing ‘Happy Birthday,’ and
she had such a blank stare. In that moment,
I knew something was off,” recalls Elizabeth
Chaillou, who perhaps had special insight
into typical childhood milestones given that
Maya is the youngest of her five children.

Chaillou also noticed for several months
that Maya didn’t respond to her name,
make eye contact with people outside of
their family, say any words or point to her
toys. Chaillou raised these concerns with
Maya’s pediatrician who connected the
Chaillou family to their county’s infants and
toddlers program.

Eventually, Maya began receiving weekly
visits from an occupational therapist,
speech therapist and a special educator, who
16 Washington FAMILY APRIL 2022
expressed concerns about autism. When
Maya was nearly 2 years old, she underwent
a comprehensive assessment at The Center
for Autism and Related Disorders (CARD)
at Kennedy Krieger Institute.

“They diagnosed her on that very same
day with autism,” recalls Chaillou. “I think
I knew in my heart that was what it was,
but hearing those words brought a flood of
emotion. I told my husband, ‘She’s going
to be with us our whole lives.’ My husband
said, ‘Liz, we have to take it one day at a
time.’ I was reminded (that) she was my
daughter the day before the diagnosis and
the day after the diagnosis.”
tell whether the differences they notice
are within the broad category of normal
childhood development or something else?
The first step is understanding what autism
spectrum disorder (ASD) is and is not.

“Autism is a neurodevelopmental disorder
that affects a person throughout the entire
life span. It impacts social learning, social
communication and aspects of cognitive
development. Children with autism may
also engage in repetitive behaviors and have
sensory sensitivities,” explains Dr. Anne Inge,
Ph.D., a psychologist and the clinical director
of the Center for Autism Spectrum Disorders
at Children’s National Hospital.

“When you’ve met one person with
autism, you’ve met one person with autism”
Is it autism?
Like Chaillou, many parents of young is a familiar saying among those in the
children may sense something is “off” with autism community. The disorder manifests
their developing child. But how can they very differently in children with ASD.




The importance of early
diagnosis of ASD
The experts interviewed for this story agree
that early assessment and intervention can
help children achieve better outcomes.

“It’s important to identify autism as
early as you can because we have very
specialized approaches for intervening,”
Inge says. “Intervention is what has been
shown to impact outcomes including
language and cognitive ability as well as risks
for comorbidities.”
Currently, autism is most frequently
diagnosed around age 4, although it can be
identified earlier. Researchers and clinicians
are working toward earlier diagnosis to be
able to offer interventions during ages 0 to 3,
making use of this important developmental
window of rapid growth.

“For kids who receive services later, it’s not
that they can’t have positive outcomes; the
outcomes tend to take a bit more work later
on compared to in the younger years when the
brain is more malleable and plastic,” says Dr.

Katelyn Kristina Vertucci, Ph.D., a psychologist
and clinical director of the Swank Autism
Center at Nemours Children’s Hospital.

This concept of neuroplasticity is an
important component of the success of
early intervention.

DeVito explains, “In the first years
of life, neural circuits, which create the
foundation for learning, grow exponentially.

Neural connections are made when babies
“IT’S IMPORTANT TO IDENTIFY
AUTISM AS EARLY AS YOU
CAN BECAUSE WE HAVE VERY
SPECIALIZED APPROACHES FOR
INTERVENING.” —DR. ANNE INGE, CHILDREN’S NATIONAL HOSPITAL
experience something. Connections become
strengthened as the experience is repeated and
learning occurs. If experiences don’t occur or
aren’t repeated, connections are lost.”
It’s crucially important that
caregivers work hand in hand with
therapists so that a child’s progress
is reinforced at home.”
Assessing autism
Awesome on the
autism spectrum
For an autism assessment, parents should
expect to meet over the course of a few days
or weeks with a multidisciplinary team that
includes child psychologists, speech-language
pathologists, occupational therapists, child
psychiatrists, nurse practitioners and behavior
specialists who work together to provide
accurate diagnoses.

Before the COVID-19 pandemic, most
assessments occurred in person at the clinical
center. Today, families and providers enjoy
the option to do virtual assessments, which
can be easier for families to schedule and
allow children to be unmasked in their own
environments where they are comfortable.

“At Sheppard Pratt’s Center for Autism,
families are supported throughout the entire
assessment process by a compassionate and
dedicated team of social workers,” says DeVito.

“We understand that a diagnosis of autism
spectrum disorder will likely be life changing
for parents. But we also hope that the diagnosis
can be a starting point for education, increased
understanding and motivation to work with
professionals to develop plans for interventions
to support the child’s development and the
family’s adjustment.”
Next steps
Following the assessment, families will have a
clearer picture of their children’s strengths and
weaknesses and a plan for supporting them in
achieving their potential.

“We try to tailor our treatment plan to
each individual kid,” says Vertucci. “We
request that they get in touch with their local
school district to see if they are eligible for
any resources in their community, such as a
preschool classroom specially designed for
them. We also recommend parent training.

An autism diagnosis can overwhelm parents.

But experts and parents can work together to
help recognize the distinctive gifts of children
on the spectrum.

“I would say that autism is a difference. It is
a difference in learning style and approach to
the world. Children with autism have unique
strengths! That’s part of the work we do—
celebrating their strengths while building on
areas that are weaker,” Inge says.

“People with autism have really contributed
to our society,” Vertucci adds. “Kids with
autism tend to have strong interests in
things they love and know every single detail
about those subjects. For example, some of
the most brilliant scientists in history, like
Albert Einstein, are thought to have been on
the spectrum.”
While that point might be true, for now,
Elizabeth Chaillou is simply enjoying the
slower pace and joy in small moments that
Maya brings to her family.

“She has taught us all to slow down and
take life day by day and appreciate the small
milestones,” says Chaillou. “When she hits
her milestones, we all know that it’s harder for
her to hit them, so it’s just that much greater.

I have learned that a lot of parents have grief
and insecurities, asking what did they do
wrong? But I urge them to give up that guilt.

I know in my heart that we did not cause this.

I did everything for Maya that I did for my other
kids. We carried her skin to skin as a newborn.

We loved her with our whole hearts. We knew
that this was truly in God’s plans for us. She is
the daughter we were meant to have, and I’m
just so glad.”
*Maya’s name has been changed to protect her
identity per parent request. n
WashingtonFAMILY.com 17
RIBBON: PORNPAK KHUNATORN/ISTOCK/GETTY IMAGES PLUS; GIRL: FIZKES/ISTOCK/GETTY IMAGES PLUS
Dr. Crystal DeVito, Ph.D., a senior child
and adolescent psychologist with The
Center for Autism at Sheppard Pratt,
explains, “The learning, thinking and
problem-solving abilities of children with
ASD can range from severely impaired to
gifted. Some require substantial support
to navigate the world, while others operate
relatively independently.”