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


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.


Autism spectrum disorder Parent perspectives Cross-cultural Service access 


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.


  1. 1.
    American Psychiatric Association. Diagnostic criteria for 299.00 Autism Spectrum Disorder. In: Diagnostic statistical manual of mental disorders. 5th ed. Washington, DC; 2013.Google Scholar
  2. 2.
    Baio J, Wiggins L, Christensen DL, Maenner MJ, Daniels J, Warren Z, et al. Prevalence of autism spectrum disorder among children aged 8 years - autism and developmental disabilities monitoring network, 11 sites, United States, 2014. MMWR Surveill Summ. 2018;67(6):1–23. Scholar
  3. 3.
    Eaves LC, Ho HH. Young adult outcome of autism spectrum disorders. J Autism Dev Disord. 2008;38(4):739–47.Google Scholar
  4. 4.
    Orsmond GI, Shattuck PT, Cooper BP, Sterzing PR, Anderson KA. Social participation among young adults with an autism spectrum disorder. J Autism Dev Disord. 2013;43(11):2710–9.Google Scholar
  5. 5.
    Roux AM, Shattuck PT, Cooper BP, Anderson KA, Wagner M, Narendorf SC. Postsecondary employment experiences among young adults with an autism spectrum disorder RH: employment in young adults with autism. J Am Acad Child Adolesc Psychiatry. 2013;52(9):931–9.Google Scholar
  6. 6.
    Shattuck PT, Narendorf SC, Cooper B, Sterzing PR, Wagner M, Taylor JL. Postsecondary education and employment among youth with an autism spectrum disorder. Pediatrics. 2012;129(6):1042–9.Google Scholar
  7. 7.
    Leigh JP, Du J. Brief report: forecasting the economic burden of autism in 2015 and 2025 in the United States. J Autism Dev Disord. 2015;45(12):4135–9.Google Scholar
  8. 8.
    Schreibman L, Dawson G, Stahmer AC, Landa R, Rogers SJ, McGee GG, et al. Naturalistic developmental behavioral interventions: empirically validated treatments for autism spectrum disorder. J Autism Dev Disord. 2015;45(8):2411–28. Scholar
  9. 9.
    Zwaigenbaum L, Bauman ML, Chouerii R, Kasari C, Carter A, Granpeesheh D, et al. Early intervention for children with autism spectrum disorder under 3 years of age: recommendations for practice and research. Pediatrics. 2015;136(1):S60–81. Scholar
  10. 10.
    Cidav Z, Munson J, Estes A, Dawson G, Rogers S, Mandell D. Cost offset associated with early start Denver model for children with autism. J Am Acad Child Adolesc Psychiatry. 2017;56(9):777–83. Scholar
  11. 11.
    Jones S, Bremer E, Lloyd M. Autism spectrum disorder: family quality of life while waiting for intervention services. Qual Life Res. 2016;26:331–42.Google Scholar
  12. 12.
    Mandell DS, Listerud J, Levy S, Pinto-Martin JA. Race differences in the age at diagnosis among Medicaid-eligible children with autism. J Am Acad Child Adolesc Psychiatry. 2002;41(12):1447–53.Google Scholar
  13. 13.
    Valicenti-McDermott M, Hottinger K, Seijo R, Shulman L. Age at diagnosis of autism spectrum disorders. J Pediatr. 2012;161:554–6.Google Scholar
  14. 14.
    Magaña S, Parish SL, Son E. Functional severity and Latino ethnicity in specialty services for children with autism spectrum disorder. J Intellect Disabil Res. 2016;60(5):424–34.Google Scholar
  15. 15.
    Fountain C, King MD, Bearman PS. Age of diagnosis for autism: individual and community factors across 10 birth cohorts. J Epidemiol Community Health. 2011;65(6):503–10. Scholar
  16. 16.
    Mazurek MO, Handen BL, Wodka EL, Nowinski L, Butter E, Engelhardt CR. Age at first autism spectrum disorder diagnosis: the role of birth cohort, demographic factors, and clinical features. J Dev Behav Pediatr. 2014;35:561–9.Google Scholar
  17. 17.
    Zuckerman KE, Mattox KM, Sinche BK, Blaschke GS, Bethell C. Racial, ethnic, and language disparities in early childhood developmental/behavioral evaluations: a narrative review. Clin Pediatr (Phila). 2014;53(7):619–31. Scholar
  18. 18.
    Thomas P, Zahorodny W, Peng B, Kim S, Jani N, Halperin W, et al. The association of autism diagnosis with socioeconomic status. Autism. 2012;16(2):201–13. Scholar
  19. 19.
    Liptak GS, Benzoni MA, Mruzek DW, Nolan KW, Thingvolle MA, Wade CM, et al. Disparities in diagnosis and access to health services for children with autism: data from the national survey of children’s health. J Dev Behav Pediatr. 2008;29:152–60.Google Scholar
  20. 20.
    Mandell DS, Wiggins LD, Carpenter LA, Daniels J, DiGuiseppi C, Durkin MS, et al. Racial/ethnic disparities in the identification of children with autism spectrum disorder. Am J Public Health. 2009;99(3):493–8. Scholar
  21. 21.
    Motel S, Patten E. The 10 largest Hispanic origin groups: characteristics, rankings, top counties. Washington, DC: Pew Research Center; 2012.Google Scholar
  22. 22.
    Magaña S, Lopez K, Aguinaga A, Morton H. Access to diagnosis and treatment services among Latino children with autism spectrum disorders. Intellect and Dev Disabil. 2013;51(3):141–53.Google Scholar
  23. 23.
    Zuckerman KE, Sinche B, Mejia A, Cobian M, Becker T, Nicolaidis C. Latino parents' perspectives on barriers to autism diagnosis. Acad Pediatr. 2014;14(3):301–8.Google Scholar
  24. 24.
    Thomas KC, Ellis AR, McLaurin C, Daniels J, Morrissey JP. Access to care for autism-related services. J Autism Dev Disord. 2007;37(10):1902–12.Google Scholar
  25. 25.
    Broder-Fingert S, Shui A, Pulcini CD, Kurowski D, Perrin JM. Racial and ethnic differences in subspecialty service use by children with autism. Pediatrics. 2013;132(1):94–100.Google Scholar
  26. 26.
    Locke J, Kang-Yi CD, Pellecchia M, Marcus S, Hadley T, Mandell DS. Ethnic disparities in school-based behavioral health service use for children with psychiatric disorders. J Sch Health. 2017;87:47–54.Google Scholar
  27. 27.
    National Council on Disability (NCD) (IDEA Series). The segregation of students with disabilities. 2018. Retrieved April 2018 from
  28. 28.
    Suite DH, La Bril R, Primm A, Harrison-Ross P. Beyond misdiagnosis, misunderstanding and mistrust: relevance of the historical perspective in the medical and mental health treatment of people of color. J Natl Med Assoc. 2007;99(8):879–85.Google Scholar
  29. 29.
    Timmins CL. The impact of language barriers on the health care of Latinos in the United States: a review of the literature and guidelines for practice. J Midwifery Womens Health. 2002;47(2):80–96.Google Scholar
  30. 30.
    Zuckerman K, Mattox BS, Donelan K, Oyundari B, Baghaee A, Bethell C. Pediatrician identification of Latino children at risk for autism spectrum disorder. Pediatrics. 2013;132(3):445–53.Google Scholar
  31. 31.
    U.S. Census Bureau. The American Community – Asians: 2004. Retrieved March 2018 from
  32. 32.
    Kang-Yi CD, Grinker RR, Mandell DS. Korean culture and autism spectrum disorders. J Autism Dev Disord. 2013;43(3):503–20. Scholar
  33. 33.
    Choi KH, Wynne ME. Providing services to Asian Americans with developmental disabilities and their families: mainstream service providers' perspective. Community Ment Health J. 2000;36(6):589–95.Google Scholar
  34. 34.
    Berger JT. Culture and ethnicity in clinical care. Arch Intern Med. 1998;159(12):2085–90.Google Scholar
  35. 35.
    Moseley KL, Freed GL, Bullard CM, Goold SD. Measuring African-American parents’ cultural mistrust while in a healthcare setting: a pilot study. J Natl Med Assoc. 2007;9(1):15–21.Google Scholar
  36. 36.
    Zoints LT, Zoints P, Harrison S, Bellinger O. Urban African American families’ perceptions of cultural sensitivity within the special education system. Focus Autism Other Dev Disabl. 2003;18(1):41–50.Google Scholar
  37. 37.
    Gourdine RM, Baffour TD, Teasley M. Autism and the African American community. Soc Work Public Health. 2011;26(4):454–70.Google Scholar
  38. 38.
    Blacher J, Cohen SR, Azad G. In the eye of the beholder: reports of autism symptoms by Anglo and Latino mothers. Res Autism Spectrum Disorders. 2014;8:1648–56.Google Scholar
  39. 39.
    García SB, Pérez AM, Ortiz AA. Mexican American mothers' beliefs about disabilities: implications for early childhood intervention. Remedial Spec Educ. 2000;21(2):90–100.Google Scholar
  40. 40.
    Donohue MR, Childs AW, Richards M, Robins DL. Race influences parent report of concerns about symptoms of autism spectrum disorder. Autism. 2017;23:100–11. [Epub ahead of print].Google Scholar
  41. 41.
    Ooi KL, Ong YS, Jacob SA, Khan TM. A meta-synthesis on parenting a child with autism. Neuropsychiatr Dis Treat. 2016;12:745–62. Scholar
  42. 42.
    Bradford LD, Newkirk C, Holden KB. Stigma and mental health in African Americans. In: Braithwaite RL, Taylor SE, Treadwell HM, editors. Health issues in the black community. San Francisco, CA: Jossey-Bass; 2009. p. 119–31.Google Scholar
  43. 43.
    Matthews AK, Corrigan PW, Smith BM, Aranda F. A qualitative exploration of African-Americans’ attitudes toward mental illness and mental illness treatment seeking. Rehabilitation Educ. 2006;20(4):253–68.Google Scholar
  44. 44.
    Grinker RR, Chambers N, Njongwe N, Lagman AE, Guthrie W, Stronach S, et al. Communities in community engagement: lessons learned from autism research in South Korea and South Africa. Autism Res. 2012;5(3):201–10. Scholar
  45. 45.
    Nock MK, Kazdin AE. Parent expectations for child therapy: assessment and relation to participation in treatment. J Child Fam Stud. 2001;10(2):155–80.Google Scholar
  46. 46.
    Zuckerman KE, Lindly OJ, Sinche BK, Nicolaidis C. Parent health beliefs, social determinants of health, and child health services utilization among US school-age children with autism. J Dev Behav Pediatr. 2015;36(3):146–57. Scholar
  47. 47.
    Longtin S, Principe G. The relationship between poverty level and urban African American parents’ awareness of evidence-based interventions for child with autism spectrum disorders: preliminary data. Focus Autism Other Dev Disabl. 2016;31(2):83–91.Google Scholar
  48. 48.
    Mackintosh VH, Myers BJ, Goin-Kochel RP. Sources of information and support used by parents of children with autism spectrum disorders. J Dev Disabl. 2005;12:41–51.Google Scholar
  49. 49.
    Pickard KE, Kilgore AN, Ingersoll BR. Using community partnerships to better understand the barriers to using an evidence-based, parent-mediated intervention for autism spectrum disorder in a Medicaid system. Am J of Community Psychol. 2016;57:391–403.Google Scholar
  50. 50.
    Fleming J, Sawyer LBE, Campbell PH. Early intervention providers’ perspectives about implementing participation-based practices. Topics Early Child Spec Educ. 2011;30:233–44.Google Scholar
  51. 51.
    Cidav Z, Marcus SC, Mandell DS. Implications of childhood autism for parental employment and earnings. Pediatrics. 2012;129(4):617–23. Scholar
  52. 52.
    Montes G, Halterman JS. Association of childhood autism spectrum disorders and loss of family income. Pediatrics. 2008;121(4):e821–6.Google Scholar
  53. 53.
    Mello MP, Urbano RC, Goldman SE, Hodapp RM. Services for children with autism spectrum disorder: comparing rural and non-rural communities. Educ Train Autism Dev Disabl. 2016;51(4):355–65.Google Scholar
  54. 54.
    Autism Intervention Research Network on Behavioral Health. AIR-B mission. 2013. Retrieved June 2018 from
  55. 55.
    Esterberg KG. Qualitative methods in social research. Boston, MA: McGraw-Hill; 2001.Google Scholar
  56. 56.
    Dedoose Version 7.5.9, web application for managing, analyzing, And presenting qualitative and mixed method research data. 2016. Los Angeles, CA: SocioCultural Research Consultants, LLC. Accessed April 2018.
  57. 57.
    Burla L, Knierim B, Liewald K, Duetz M, Abel T. From text to codings: intercoder reliability assessment in qualitative content analysis. Nurs Res. 2008;57(2):113–7.Google Scholar
  58. 58.
    Viera AJ, Garrett JM. Understanding interobserver agreement: the kappa statistic. Fam Med. 2005;37(5):360–3.Google Scholar
  59. 59.
    Lopez GI, Figueroa M, Connor SE, Maliski SL. Translation barriers in conducting qualitative research with Spanish speakers. Qual Health Res. 2008;18(12):1729–37.Google Scholar
  60. 60.
    MissyUSA. 2009. Retrieved March 2018 from
  61. 61.
    Jezewski M, Sotnik P. Disability service providers as culture brokers. In: Stone JH, editor. Culture and disability: providing culturally competent services. Thousand Oaks, CA: Sage; 2005. p. 15–31.Google Scholar
  62. 62.
    Adams KS, Christenson SL. Trust and the family–school relationship examination of parent–teacher differences in elementary and secondary grades. J School Psychol. 2000;38(5):477–97.Google Scholar
  63. 63.
    Iadarola S, Hetherington S, Clinton C, Dean M, Reisinger E, Huynh L, et al. Services for children with autism spectrum disorder in three, large urban school districts: perspectives of parents and educators. Autism. 2015;19(6):694–703. Scholar
  64. 64.
    LaFromboise TD, Dixon DN. American Indian perception of trustworthiness in a counseling interview. J Couns Psychol. 1981;28:135–9.Google Scholar
  65. 65.
    Ward EC. Keeping it real: a grounded theory study of African American clients engaging in counseling at a community mental health agency. J Couns Psychol. 2005;52:471–81.Google Scholar
  66. 66.
    Cook CT, Kosoko-Lasaki O, O'Brien R. Satisfaction with and perceived cultural competency of healthcare providers: the minority experience. J Natl Med Assoc. 2005;97(8):1078–87.Google Scholar
  67. 67.
    Montes G, Halterman JS, Magyar CI. Access to and satisfaction with school and community health services for US children with ASD. Pediatrics. 2009;124(Supplement 4):S407–13.Google Scholar
  68. 68.
    American Academy of Pediatrics. Cultural and linguistic determinants in the diagnosis and management of developmental delay in a 4-year-old. Pediatrics. 2004;114(Supplement 6):1442–7.Google Scholar
  69. 69.
    Arunyanart W, Fenick A, Ukritchon S, Imjaijitt W, Northrup V, Weitzman C. Developmental and autism screening: a survey across six states. Infants Young Child. 2012;25(3):175–87.Google Scholar
  70. 70.
    Keil A, Breunig C, Fleischfresser S, Oftedahl E. Promoting routine use of developmental and autism-specific screening tools by pediatric primary care clinicians. WMJ. 2014;113(6):227–31.Google Scholar
  71. 71.
    Carbone PS, Behl DD, Azor V, Murphy NA. The medical home for children with autism spectrum disorders: parent and pediatrician perspectives. J Autism Dev Disord. 2010;40(3):317–24.Google Scholar
  72. 72.
    Sibinga EM, Ottolini MC, Duggan AK, Wilson MH. Parent-pediatrician communication about complementary and alternative medicine use for children. Clin Pediatr (Phila). 2004;43(4):367–73.Google Scholar
  73. 73.
    Hironaka LK, Paasche-Orlow MK. The implications of health literacy on patient-provider communication. Arch Dis Child. 2008;93(5):428–32.Google Scholar
  74. 74.
    Dinh TTH, Bonner A, Clark R, Ramsbotham J, Hines S. The effectiveness of the teach-back method on adherence and self-management in health education for people with chronic disease: a systematic review. JBI Database Syst Rev Implement Rep. 2016;14(1):210–47.Google Scholar
  75. 75.
    Wilson FL, Mayeta-Peart A, Parada-Webster L, Nordstrom C. Using the teach-back method to increase maternal immunization literacy among low-income pregnant women in Jamaica: a pilot study. J Pediatr Nurs. 2012;27(5):451–9.Google Scholar
  76. 76.
    Betancourt JR, Green AR, Carrillo JE, Owusu Ananeh-Firempong I. Defining cultural competence: a practical framework for addressing racial/ethnic disparities in health and health care. Public Health Rep. 2003;118(4):293–302. Scholar
  77. 77.
    Kena G, Aud S, Johnson F, Wang X, Zhang J, Rathbun A, et al. The condition of education 2014 (NCES 2014-083). U.S. Department of Education. Washington, DC: National Center for Education Statistics; 2014. Retrieved [march, 2108] from Scholar
  78. 78.
    Rhoades RA, Scarpa A, Salley B. The importance of physician knowledge of autism spectrum disorder: results of a parent survey. BMC Pediatr. 2007;7(37):1–10.
  79. 79.
    Burkett K, Morris E, Manning-Courtney P, Anthony J, Shambley-Ebron D. African American families on autism diagnosis and treatment: the influence of culture. J Autism Dev Disord. 2015;45(10):3244–54.Google Scholar
  80. 80.
    Grinker RR, Kang-Yi CD, Ahmann C, Beidas RS, Lagman A, Mandell DS. Cultural adaptation and translation of outreach materials on autism spectrum disorder. J Autism Dev Disord. 2015;45(8):2329–36.Google Scholar
  81. 81.
    Shapiro J, Monzó LD, Rueda R, Gomez JA, Blacher J. Alienated advocacy: perspectives of Latina mothers of young adults with developmental disabilities on service systems. Ment Retard. 2004;42(1):37–54.Google Scholar
  82. 82.
    Brookman-Frazee L, Baker-Ericzén M, Stadnick N, Taylor R. Parent perspectives on community mental health services for children with autism spectrum disorders. J Child Fam Stud. 2012;21(4):533–44. Scholar
  83. 83.
    Dohan D, Schrag D. Using navigators to improve care of underserved patients. Cancer. 2005;104(4):848–55.Google Scholar
  84. 84.
    Bradford JB, Coleman S, Cunningham W. HIV system navigation: an emerging model to improve HIV care access. AIDS Patient Care STDs. 2007;21(S1):S-49–58.Google Scholar
  85. 85.
    Carr T, Shih W, Lawton K, Lord C, King B, Kasari C. The relationship between treatment attendance, adherence, and outcome in a caregiver-mediated intervention for low-resourced families of young children with autism spectrum disorder. Autism. 2016;20(6):643–52.Google Scholar
  86. 86.
    Magaña S, Lopez K, Machalicek W. Parents taking action: a psycho-educational intervention for Latino parents of children with autism spectrum disorder. Fam Process. 2017;56(1):59–74.Google Scholar
  87. 87.
    Vickers KS, Ridgeway JL, Hathaway JC, Egginton JS, Kaderlik AB, Katzelnick DJ. Integration of mental health resources in a primary care setting leads to increased provider satisfaction and patient access. Gen Hospital Psychiatry. 2013;35(5):461–7.Google Scholar
  88. 88.
    Horevitz E, Organista KC, Arean PA. Depression treatment uptake in integrated primary care: how a warm handoff and other factors affect decision making by Latinos. Psychiatr Serv. 2015;66(8):824–30.Google Scholar
  89. 89.
    Kasari C, Lawton K, Shih W, Barker TV, Landa R, Lord C, et al. Caregiver-mediated intervention for low-resourced preschoolers with autism: an RCT. Pediatrics. 2014;134(1):e72–9. Scholar
  90. 90.
    Ingersoll B, Wainer AL, Berger NI, Pickard KE, Bonter N. Comparison of a self-directed and therapist-assisted telehealth parent-mediated intervention for children with ASD: a pilot RCT. J Autism Dev Disord. 2016;46(7):2275–84.Google Scholar
  91. 91.
    Wacker DP, Lee JF, Dalmau YCP, Kopelman TG, Lindgren SD, Kuhle J, et al. Conducting functional communication training via telehealth to reduce the problem behavior of young children with autism. J of Dev Phys Disabl. 2013;25(1):35–48.Google Scholar

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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