Autism Adaptive Community-based Treatment to Improve Outcomes Using Navigators (ACTION) Network

Research shows that a stable diagnosis of autism spectrum disorder (ASD) can be made by
trained professionals at 18-24 months and yet the median age of diagnosis in the US is 4-5
years of age. Lower income, minority, and rural families receive a diagnosis up to 1.5 years
later and more likely miss the window of opportunity for early intervention (EI). One of the
greatest challenges researchers face, in spite of scientific advances and investments, is how
to bridge the healthcare science-to-service gap and address health disparities in access to
evidence-based EI for children with ASD. Doing this would be the best solution to improve
lifelong outcomes, reduce costs to society, and change the landscape of autism.

The Autism Adaptive Community-based Treatment to Improve Outcomes Using Navigators (ACTION)
Network—a new interdisciplinary network of 6 institutions—will blend clinical effectiveness
and implementation research designs to study individual and combined effects of 2
evidence-based interventions in real world settings: 1) engage families to access resources
and support when they first learn their child has signs of ASD using an evidence-based
intervention that integrates motivational interviewing and problem solving education
(MI+PSE); and 2) coach families to embed evidence-based intervention strategies for toddlers
with ASD in everyday activities using the Early Social Interaction (ESI) model. Building on
existing infrastructure, the Network will infuse mobile technology using the Autism
Navigator® collection of web-based courses and tools.

Families will be recruited by screening in community-based primary care and EI systems in 3
diverse regions in 2 states: Florida and Massachusetts. In Phase 1, investigators will
compare the effectiveness of adaptive interventions that use MI+PSE with and without ESI in a
2-stage Sequential Multiple Assignment Randomized Trial (SMART) design on family engagement
in EI, parent use of intervention strategies in everyday activities, and child outcomes of
social communication, active engagement, autism symptoms, developmental level, and adaptive
behavior. In Phase 2, investigators will construct an adaptive intervention to optimize the
effects of MI+PSE with ESI based on the SMART and study the feasibility of implementation in
two new service systems in California: Kaiser Permanente Healthcare System and the National
Black Church Initiative.

The ACTION Network brings a unique interdisciplinary team with expertise spanning early
detection, maternal mental health, clinical trials, health disparities, implementation
science, and policy. Using dynamic technology platform the Network has ambitious
dissemination aims of informing a community of change agents committed to impact at the
population level. This research network can build the capacity of community-based systems to
provide earlier and widespread access to cost-efficient, community-viable treatment and be
ready for immediate and rapid implementation across the US. Findings will advance science by
providing researchers with a method for rapidly deploying evidence-based practices, enabling
research at younger ages—accelerating genetic, neuroscience, and intervention research—and
lead to transformative changes in workforce development and healthcare delivery.

Inclusion Criteria:

- Positive screen for autism by community provider in a primary care setting

- Child is between 12 and 24 months old

- Parent completes the Smart Early Screening for Autism and Communication Disorders
(ESAC)

- Parent participates in the home observation to complete the Systematic Observation of
Red Flags (SORF) of ASD

- Positive autism screen on the SORF

- Lives in the designated study region in Florida and Massachusetts

Exclusion Criteria:

- Parent/caregiver declines to participate in the study

- Child is already receiving early intervention services

- Child does not screen positive for autism on the ESAC and/or SORF

- Child is over 24 months old