Format

Send to

Choose Destination
J Racial Ethn Health Disparities. 2019 Mar 11. doi: 10.1007/s40615-019-00575-y. [Epub ahead of print]

Caregiver Voices: Cross-Cultural Input on Improving Access to Autism Services.

Author information

1
Departments of Psychiatry, Psychology & Human Development, University of California, Davis MIND Institute, 2825 50th St, Sacramento, CA, 95817, USA. astahmer@ucdavis.edu.
2
Departments of Psychiatry, Psychology & Human Development, University of California, Davis MIND Institute, 2825 50th St, Sacramento, CA, 95817, USA.
3
Division of Developmental and Behavioral Pediatrics & Strong Center for Developmental Disabilities, University of Rochester Medical Center, 265 Crittenden Blvd., Rochester, NY, 14642, USA.
4
Perelman School of Medicine, Center for Mental Health Policy and Services Research, University of Pennsylvania, 3535 Market St., Rm. 3100, Philadelphia, PA, 19104, USA.
5
Department of Psychology, Michigan State University, 316 Physics, Rd., East Lansing, MI, 48824, USA.
6
Department of Psychiatry, University of California, Los Angeles Graduate School of Education & Information Studies & Center for Autism Research & Treatment, UCLA Semel Institute 68-268, Los Angeles, CA, 90024, USA.
7
Department of Special Education, San Diego State University, 5500 Campanile Dr., San Diego, CA, 92182, USA.
8
College of Education, California State University, Sacramento, 6000 J St., Sacramento, CA, 95819, USA.
9
Mental Health Department, Sant Juan de Deu Barcelona Children's Hospital, Itaka Building 1st floor, Passeig Sant Joan de Déu 2, 08950 Esplugues de Llobregat, Barcelona, Catalonia, Spain.
10
A.J. Drexel Autism Institute, Drexel University, 3020 Market Street | Suite 560, Philadelphia, PA, 19104, USA.

Abstract

Decades of research have established that racial ethnic minority, low-income, and/or non-English speaking children with autism spectrum disorder (ASD) are diagnosed later than white children, and their families experience greater difficulty accessing services in the USA. Delayed access to timely diagnosis and early intervention may impact child outcomes and family quality of life. Despite their cognition of these disparities and their significant impact on the lives of those affected, explanations for the barriers experienced by underserved families are elusive, likely due to the complex interaction between structural and family factors. This study used qualitative methods to gather family and provider perspectives of perceived barriers and facilitators to obtaining an ASD diagnosis and accessing ASD-related services for underserved families. Themes from focus groups and interviews with families from three cultural groups (black, Hispanic/Latino, and Korean) and three primary languages (English, Korean, and Spanish) highlight specific barriers related to family, community, and systemic challenges as well as facilitators to accessing care for these populations. Family experiences are expanded upon with viewpoints from the providers who work with them. Recommendations are made for reducing disparities in the existing ASD service system including increasing professional, family, and community education; increasing culturally responsive care; improving provider-family partnerships; and addressing practical challenges to service access.

KEYWORDS:

Autism spectrum disorder; Cross-cultural; Parent perspectives; Service access

PMID:
30859514
DOI:
10.1007/s40615-019-00575-y

Supplemental Content

Loading ...
Support Center