Mobilizing Community Systems to Tackle Challenges of Early Detection of ASD in Underserved Populations

Background: There is a pressing need to improve the capacity of communities to detect ASD early to change developmental trajectories and improve outcomes. Although delays in social communication usually appear by 18-24 months, most children are not diagnosed until 4-5 years of age. Underserved families are identified even later and are underrepresented in intervention research. This new collaborative of 4 universities in partnership with the National Black Church Initiative (NBCI) has infused community-based participatory research and implementation science within a services research study to build consensus with stakeholders in the planning stages to lay the foundation for sustained utilization. The long-term project aim is to study effectiveness of mobilizing community systems using a web-based professional development platform with links to family resources and tools to increase family engagement and expedite receipt of screening, diagnosis, and early intervention services. 

Objectives: To describe qualitative research findings from focus groups with families and providers designed 1) to identify challenges and barriers to early detection and access to early intervention (EI) for children under 24 months, and 2) to develop strategies to promote EI in underserved populations.

Methods: Focus groups with community stakeholders, including parents (n = 105) and professionals (n = 45), were conducted in Southwest Florida, Atlanta, Philadelphia, and NYC.  Separate groups were held for primary care physicians, parents/grandparents from NBCI, and parents of children at-risk for developmental delay. Topics included: 1) barriers to early screening in primary care settings; 2) strategies to engage families and professionals and improve participation in the screening/referral process; and 3) information sharing about EI with families at the time of screening, diagnosis, and referral. Focus groups were audio-recorded and transcribed. 

Driven by an iterative, grounded theory approach, researchers analyzed transcripts with an inductive, open-coding technique to identify emergent thematic dimensions, recurrent patterns and analytical categories. Focused coding of the remaining transcripts, using Dedoose software, identified major themes and frequency counts linked to core theoretical concepts. The use of multiple sites and the mapping of diverse stakeholder viewpoints within the same community (physicians, grandparents, and parents) onto themes allowed for increased dimensions of variation in this purposive sample, and for saturation of themes. Research team members completed five inter-rater reliability tests in Dedoose, resulting in very good agreement (average pooled Cohen’s kappa=93.6).  Further measures of inter-rater reliability included consensus coding, data review, and discussion and resolution of discrepancies. 

Results:   Sixteen major themes emerged from 1,709 excerpts, and illustrative quotes were drawn from diverse topics surrounding culture, early developmental milestones and red flags, family-physician trust, previous experience with individuals with autism/other disabilities, stigma, materials, resources, support, and practical and psychological/motivational barriers to accessing screening, assessment and intervention (Figure 1).  

Conclusions:   Topics for further exploration include the role of family power structures and processes impacting engagement in community screening, diagnosis and early intervention services; trusted materials and resources used in information gathering about ASD and developmental milestones; where families turn when traditional support systems fail; and family feelings, perspectives, and resistance to classifying a child who is continuously growing.