New network and website boost early treatment of autism
in long wait lists. Our approach is: Can we train Earlier in the year, they unveiled yet another
printer, Amy Wetherby’s big year got people who don’t have the specialty degree but way for bewildered families – and professionals
immeasurably bigger. have experience with the families?” – to answer such scary questions as: What does
In early September, her team at the
For the ACE ACTION Network, Wetherby has
autism look like? How do I tell if infants might have
College of Medicine’s Autism Institute learned assembled an interdisciplinary team of experts in that the National Institutes of Health had early detection, maternal mental health, clinical awarded them a five-year, $10.2 million grant trials, health disparities, implementation science (ecosystem.firstwordsproject.com). It teaches
to set up an ACE network. “ACE” stands for and policy. They come from not only FSU but social workers, early childhood educators, nurses,
Autism Centers of Excellence. Only a handful also Boston Medical Center, the University of family physicians, pediatricians, speech language
of them exist. Miami, Boston University, the University of pathologists, parents and others the early warning
Massachusetts Boston, Kaiser Permanente, the signs of autism spectrum disorder.
The mission of their new ACE ACTION
Network is to test a two-part home intervention Children’s Hospital of Philadelphia and the
designed to bridge the gap between diagnosis National Black Church Initiative.
and treatment of autism spectrum disorder.
“It allows us to collaborate with universities
across the country and to develop and train a
new workforce of individuals in the community
“Our goal,” Wetherby said, “is to catch autism
it? What’s the next step?
It’s a new website: Family Ecosystem
There’s a provider portal (for those who
work with children) and a parent portal. The
website uses existing tools developed by the
early, and get underserved children ready for FIRST WORDS Project and Autism Navigator
regular kindergarten.” – projects in the Autism Institute – to allow
Even though a diagnosis is possible as young
providers and families to work together.
who specialize in helping families understand as 18 months, the median age in the U.S. is autism,” said Wetherby, a Distinguished still 4 to 5 years. For minority, low-income and next, depending on the evidence accumulating
Research Professor. They’re calling those rural children, it’s more like age 6 – when the about the child’s development. Along the way,
individuals “family navigators.” opportunity to receive intervention early is it reminds providers about what’s at stake,
“Right now,” Wetherby said, “early
At each step, the website describes what to do
no longer possible. That’s why Wetherby and with messages such as this: “Sharpen your
intervention providers are usually experts such her team keep searching for more effective, observation skills. Don’t be the one who said,
as behavior specialists or speech pathologists. practical and affordable ways to diagnose and ‘Let’s wait and see,’ when you had the chance to
However, there’s a shortage of them, resulting treat young children. help a family act early.”
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ust before this magazine went to the