Mobilizing Community Systems to Engage Families in Early Autism Spectrum Disorder (ASD) Detection & Services

The American Academy of Pediatrics recommends screening all children for autism spectrum
disorder (ASD) at 18 and 24 months because research indicates that earlier intervention
maximizes children's outcomes. The earliest signs of ASD are delays in social communication
milestones that appear in the first 2 years and yet most children are not diagnosed until 4-5
years of age. Underserved families are identified even later and significantly
underrepresented in intervention research. It is vitally important to mobilize community
service systems to impact family engagement throughout the process of screening, evaluation,
and early intervention (EI) and to support linkages to public community-based EI in order to
address health disparities. This collaborative investigation of 4 universities aims to
document the effectiveness of an online automated universal screen for communication delay
and autism initially at 18 months of age and decision rule for referral to an ASD evaluation,
and to study an evidence-based intervention to increase family engagement and expedite
receipt of screening, diagnosis, eligibility for EI, and EI services. The study will focus on
the youngest age when ASD can be detected reliably, which is 18 months, and compare the
effectiveness of screening and referral by 3 different community service systems: 1) primary
care including private and public health care agencies and federally qualified health
centers; 2) federal programs such as Women, Infants, and Children (WIC) Food and Nutrition
Service and Early Head Start; and 3) the National Black Church Initiative (NBCI). Using the
Autism Navigator web-based platform the investigators will expand their capacity for
universal ASD screening and referral for diagnosis and determining eligibility by EI
providers through the public Individuals with Disabilities Education Act (IDEA) Part C system
for children birth to 3 years of age. Innovative web-based technology will be integrated at
multiple levels— as the basis for an interactive professional development course to enable
these community service systems to efficiently learn about autism and implement a universal
broadband and autism-specific screening with seamless automation that links to electronic
health records and provides families with web-based tools about autism. This
multidisciplinary research team will conduct a multisite pragmatic randomized clinical trial
to test the effectiveness of an evidence-based Family Engagement Intervention plus Autism
Navigator compared to Autism Navigator Enhanced Practice alone. The investigators will also
conduct an exploratory study to test strategies to improve uptake of evidence-based
intervention by community-based EI providers through the Part C system. This protocol has the
potential to lower the age of screening for ASD to 18 months, which will have important
implications for earlier access to intervention and improving ASD service systems and be
ready for immediate and rapid implementation in community settings across the US. Findings
will advance science by providing researchers with a method for recruiting a population-based
sample, allowing for research at younger ages, which could accelerate genetic, neuroscience,
and intervention research, and lead to transformative changes to community healthcare
delivery.

Inclusion Criteria:

1. Community service providers will be recruited from the specific catchment areas of the
4 sites in Florida, Georgia, New York, and Pennsylvania from 3 different community
service systems:

1. primary care including private, public, and military health care agencies and
federally qualified health centers;

2. federal programs including Women, Infants, and Children (WIC) Food and Nutrition
Service, Early Head Start, and other social programs supporting low-income
families; and

3. the National Black Church Initiative (NBCI) and other religious networks serving
minorities.

2. Children are screened between 9 and 18 months of age by these community service
providers who have agreed to be in this study and their families.