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

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A Correction to this article was published on 04 April 2019

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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.

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  • 04 April 2019

    Please note that the middle name of coauthor Francisco Reinosa Segovia was misspelled (as “Rienosa”) is this article as originally published.

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Funding

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

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Authors and Affiliations

  1. Departments of Psychiatry, Psychology & Human Development, University of California, Davis MIND Institute, 2825 50th St, Sacramento, CA, 95817, USA

    Aubyn C. Stahmer, Sarah Vejnoska, Elizabeth H Morgan & Aritz Aranbarri

  2. Division of Developmental and Behavioral Pediatrics & Strong Center for Developmental Disabilities, University of Rochester Medical Center, 265 Crittenden Blvd., Rochester, NY, 14642, USA

    Suzannah Iadarola, Asim Javed, Samantha Hochheimer & Tristram Smith

  3. Perelman School of Medicine, Center for Mental Health Policy and Services Research, University of Pennsylvania, 3535 Market St., Rm. 3100, Philadelphia, PA, 19104, USA

    Diondra Straiton, Briana Bronstein & David Mandell

  4. Department of Psychology, Michigan State University, 316 Physics, Rd., East Lansing, MI, 48824, USA

    Diondra Straiton

  5. 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

    Francisco Reinosa Segovia, Paul Luelmo, Hyon Soo Lee & Connie Kasari

  6. Department of Special Education, San Diego State University, 5500 Campanile Dr., San Diego, CA, 92182, USA

    Paul Luelmo

  7. College of Education, California State University, Sacramento, 6000 J St., Sacramento, CA, 95819, USA

    EunMi Cho

  8. 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

    Aritz Aranbarri

  9. A.J. Drexel Autism Institute, Drexel University, 3020 Market Street | Suite 560, Philadelphia, PA, 19104, USA

    Elizabeth McGhee Hassrick

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  1. Aubyn C. Stahmer
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  2. Sarah Vejnoska
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Correspondence to Aubyn C. Stahmer.

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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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The original article has been corrected: The middle name of coauthor Francisco Reinosa Segovia was misspelled (as “Rienosa”) in this article as originally published.

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Stahmer, A.C., Vejnoska, S., Iadarola, S. et al. Caregiver Voices: Cross-Cultural Input on Improving Access to Autism Services. J. Racial and Ethnic Health Disparities 6, 752–773 (2019). https://doi.org/10.1007/s40615-019-00575-y

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