Building a Family Navigation Matrix for Children with Autism: A Journey-Mapping Study

Introduction

Families of children with autism spectrum disorder (ASD) face fragmented services and uncertain next steps across screening, diagnosis, intervention, and community rehabilitation. Navigation tools that make roles and actions explicit at each stage are scarce.

Methods

We adopted a longitudinal qualitative design. Participants included 10 ASD families (child age 3–12 years), 8 clinicians/nurses, and 6 community workers. Children were clinically diagnosed per DSM-5-TR; where available, ADOS-2 informed clinical judgment. Functional levels varied (Levels 1–3). The trajectory was partitioned into four nodes—suspected signs, diagnostic assessment, intervention, and rehabilitation. At each node, we conducted stage-aligned interviews and co-creation workshops to elicit touchpoints, pain points, and needs, visualized via journey maps. A matrix analysis crossed stages (rows) with support types (columns) to derive navigation units specifying tasks, recommended methods, accountable roles, and accessible resources. Triangulation across participant groups and an audit trail enhanced trustworthiness.

Results

We produced a complete journey mapping the family experience from initial screening through community-based rehabilitation. Across this journey, we identified ten recurring pain points and twenty priority needs, derived from the perspectives of families and service providers. Through matrix analysis, we developed a preliminary navigation matrix comprising eighteen actionable cells, each specifying the associated task, the recommended method of implementation, the accountable role, and the accessible resources. Two examples illustrate the application of this matrix. For referral and appointment navigation at the diagnostic stage, the nurse or social worker is designated as the accountable party, with deliverables including a one-stop referral link, a city-level clinic list, and a standardized intake form. For parent coaching and progress monitoring at the intervention stage, the nurse or therapist is designated as the accountable party, with deliverables including brief video modules, a logbook, and monthly check-ins. 

Conclusions

The journey-informed navigation matrix operationalizes who does what, when, and with which resources across the ASD pathway. Next steps: a two-round Delphi to refine items (consensus: IQR ≤ 1 and ≥80% agreement), followed by an 8-week pilot in outpatient services (n=24 families), evaluating time-to-diagnosis, referral success rate, and caregiver navigation self-efficacy (using the Family Empowerment Scale service-system subscale).