Peer-reviewed article
Understanding disparities in autism diagnosis and care: A socioecological perspective.
Bala A, Deban C, Hoskinson H, Mukhtar M, Shah A et al. ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This paper examines why children from minoritized racial and ethnic backgrounds, girls, and low-income families experience delays in autism diagnosis and access to care. Using a socioecological framework, it identifies barriers operating at multiple levels: individual factors like diagnostic bias, interpersonal trust issues, community resource gaps, organizational screening inconsistencies, and policy variation. The authors argue that while autism prevalence is now similar across racial groups, significant disparities persist in age of diagnosis, service access, and outcomes. Addressing these disparities requires systemic change including workforce training, diversification, and community partnership rather than focusing only on improved symptom recognition.
Key points
- Diagnostic tools normed on Western, predominantly White samples contribute to underdiagnosis in children from other backgrounds
- Girls from minoritized racial and ethnic backgrounds face compounded delays due to symptom camouflaging and cultural assessment bias
- Caregivers from minoritized groups report lower perceived quality of care and greater barriers to diagnostic follow-through
- Organizational barriers include inconsistent screening adherence, limited diagnostic capacity, lengthy waitlists, and inequitable reimbursement structures
- Policy variation in state insurance mandates, Medicaid rates, workforce distribution, and telehealth regulations creates inequitable conditions for care access
Limitations
This is a conceptual framework paper that synthesizes literature rather than presenting original data on autism disparities. It does not measure the relative contribution of factors at different socioecological levels or provide quantitative evidence on which interventions most effectively reduce disparities.
Abstract
Disparities in autism spectrum disorder (ASD) identification and care are well documented across racial and ethnic, socioeconomic, and geographic lines, yet their underlying mechanisms are incompletely understood. This paper applies the Socioecological Model (SEM) as an organizing framework to examine how individual, interpersonal, community, organizational, and policy-level factors interact to produce inequitable trajectories in ASD diagnosis and service access. At the individual level, heterogeneity in symptom presentation, co-occurring psychiatric conditions, and diagnostic tools normed on Western, predominantly White samples contribute to variation in recognition. Girls from minoritized racial and ethnic backgrounds face compounded delays related to both sex-related camouflaging and cultural assessment bias. At the interpersonal level, provider-family communication, trust, and stigma shape whether developmental concerns are raised, referrals are completed, and services are engaged. Systematic reviews document that caregivers from minoritized groups report lower perceived quality of care and greater barriers to diagnostic follow-through. At the community level, neighborhood disadvantage, school resource variability, and culturally embedded interpretations of child development influence help-seeking and access to early intervention. At the organizational level, inconsistent screening adherence, limited diagnostic capacity, lengthy waitlists, and inequitable reimbursement structures create structural bottlenecks that disproportionately affect publicly insured and minoritized families. At the policy level, variation in state insurance mandates, Medicaid reimbursement rates, workforce distribution, and telehealth regulatory frameworks establish the conditions under which all lower-level factors operate. Recent surveillance data indicate that ASD prevalence among Hispanic, Black, and Asian or Pacific Islander children now exceeds that of White children in some cohorts, reflecting expanded screening and policy reform. However, convergence in prevalence does not constitute equity. Disparities in age at diagnosis, co-occurring intellectual disability, service intensity, and long-term outcomes persist. This paper also addresses training and workforce implications, arguing that sustainable equity requires structural competency education, workforce diversification, and community-partnered approaches integrated across career stages. The SEM framework highlights that disparities in ASD care are not attributable to individual clinical factors alone but emerge from the interaction of relational, institutional, and structural forces. Coordinated, multilevel strategies that extend beyond improved symptom recognition to systemic transformation are necessary to ensure timely, culturally responsive, and universally accessible care for all children.