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

  • Aubyn C. StahmerEmail author
  • Sarah Vejnoska
  • Suzannah Iadarola
  • Diondra Straiton
  • Francisco Reinosa Segovia
  • Paul Luelmo
  • Elizabeth H Morgan
  • Hyon Soo Lee
  • Asim Javed
  • Briana Bronstein
  • Samantha Hochheimer
  • EunMi Cho
  • Aritz Aranbarri
  • David Mandell
  • Elizabeth McGhee Hassrick
  • Tristram Smith
  • Connie Kasari
Article

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 Parent perspectives Cross-cultural Service access 

Notes

Funding Information

This study was funded by the Health Resources Services Administration (HRSA) award number UA3 MC11055 HRSA PI: Kasari.

Compliance with Ethical Standards

Conflict of Interest

The authors declare they have no conflict of interest.

Ethical Approval

All procedures performed in this study were in accordance with the ethical standards of the University of California, Los Angeles, University of California, Davis, University of Pennsylvania, Drexel University, and University of Rochester institutional research boards and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.

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Copyright information

© W. Montague Cobb-NMA Health Institute 2019
corrected publication April 2019

Authors and Affiliations

  • Aubyn C. Stahmer
    • 1
    Email author
  • Sarah Vejnoska
    • 1
  • Suzannah Iadarola
    • 2
  • Diondra Straiton
    • 3
    • 4
  • Francisco Reinosa Segovia
    • 5
  • Paul Luelmo
    • 5
    • 6
  • Elizabeth H Morgan
    • 1
  • Hyon Soo Lee
    • 5
  • Asim Javed
    • 2
  • Briana Bronstein
    • 3
  • Samantha Hochheimer
    • 2
  • EunMi Cho
    • 7
  • Aritz Aranbarri
    • 1
    • 8
  • David Mandell
    • 3
  • Elizabeth McGhee Hassrick
    • 9
  • Tristram Smith
    • 2
  • Connie Kasari
    • 5
  1. 1.Departments of Psychiatry, Psychology & Human DevelopmentUniversity of California, Davis MIND InstituteSacramentoUSA
  2. 2.Division of Developmental and Behavioral Pediatrics & Strong Center for Developmental DisabilitiesUniversity of Rochester Medical CenterRochesterUSA
  3. 3.Perelman School of Medicine, Center for Mental Health Policy and Services ResearchUniversity of PennsylvaniaPhiladelphiaUSA
  4. 4.Department of PsychologyMichigan State UniversityEast LansingUSA
  5. 5.Department of PsychiatryUniversity of California, Los Angeles Graduate School of Education & Information Studies & Center for Autism Research & TreatmentLos AngelesUSA
  6. 6.Department of Special EducationSan Diego State UniversitySan DiegoUSA
  7. 7.College of EducationCalifornia State University, SacramentoSacramentoUSA
  8. 8.Mental Health DepartmentSant Juan de Deu Barcelona Children’s HospitalBarcelonaSpain
  9. 9.A.J. Drexel Autism InstituteDrexel UniversityPhiladelphiaUSA

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