Autism service barriers for Latine children and their families: a participatory approach to adapting autism diagnostic care.

INTRODUCTION

Latine children from families with limited English proficiency (LEP) experience barriers to timely autism diagnosis resulting in persistent health inequities. This participatory mixed-methods study examined these barriers and identified multi-level strategies to adapt diagnostic care models for Spanish-speaking Latine families.

METHODS

Participants included twelve caregivers of thirteen autistic children with parent reported diagnosis of autism, twelve clinicians, and six care coordinators. All participants completed surveys and participated in qualitative interviews or focus groups.

RESULTS

Quantitative findings revealed significant lag between caregiver's first developmental concern and diagnosis, limited autism knowledge, and difficulty navigating care. Qualitative results highlighted systemic barriers, including clinician-patient language discordance, interpreter inaccuracies and quality variability, cultural stigma, and long waitlists. Clinicians reported challenges with communicating about autism with Spanish-speaking families and emphasized language and cultural differences as primary barriers. Caregivers described social isolation, mistrust of health systems, and emotional distress compounded by immigration-related stressors.

DISCUSSION: Findings underscore the need for structural adaptation of care approaches beyond translation services.