Latino Parents' Perspectives on Barriers to Autism Diagnosis



      Latino children are diagnosed with autism spectrum disorders (ASDs) at older ages and at the point of more severe symptoms. We sought to qualitatively describe community, family, and health care system barriers to ASD diagnosis in Latino children.


      Five focus groups and 4 qualitative interviews were conducted with 33 parents of Latino children previously diagnosed with an ASD. Participants described Latino community perceptions of autism and barriers they experienced during the diagnostic process. Sessions were audiorecorded and transcribed. Transcripts were coded by 2 researchers, and data were analyzed using thematic analysis.


      Parents reported low levels of ASD information and high levels of mental health and disability stigma in the Latino community. Parents had poor access to care as a result of poverty, limited English proficiency, and lack of empowerment to take advantage of services. Providers sometimes dismissed parents' concerns. The ASD diagnostic process itself was slow, inconvenient, confusing, and uncomfortable for the child. These factors led many parents to normalize their child's early behaviors, deny that a problem existed, and lose trust in the medical system.


      Additional educational outreach to Latino families, destigmatization of ASD, streamlining the ASD diagnostic process, and providing additional support to Latino parents of at-risk children may decrease delays in ASD diagnosis among Latino children.


      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'


      Subscribe to Academic Pediatrics
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect


        • Blumberg S.J.
        • Bramlett M.D.
        • Kogan M.
        • et al.
        Changes in Parent-Reported Prevalence of Autism Spectrum Disorder in School-Aged US Children: 2007 to 2011–12.
        Centers for Disease Control and Prevention, Atlanta, Ga2013 (Available at:) (Accessed January 5, 2014)
        • Hill A.
        • Bolte S.
        • Petrova G.
        • et al.
        Stability and interpersonal agreement of the interview-based diagnosis of autism.
        Psychopathology. 2001; 34: 187-191
        • Johnson C.P.
        • Myers S.M.
        American Academy of Pediatrics Council on Children With Disabilities. Identification and evaluation of children with autism spectrum disorders.
        Pediatrics. 2007; 120: 1183-1215
        • Mandell D.S.
        • Wiggins L.D.
        • Carpenter L.A.
        • et al.
        Racial/ethnic disparities in the identification of children with autism spectrum disorders.
        Am J Public Health. 2009; 99: 493-498
        • Mandell D.S.
        • Ittenbach R.F.
        • Levy S.E.
        • Pinto-Martin J.A.
        Disparities in diagnoses received prior to a diagnosis of autism spectrum disorder.
        J Autism Dev Disord. 2007; 37: 1795-1802
        • Fountain C.
        • King M.D.
        • Bearman P.S.
        Age of diagnosis for autism: Individual and community factors across 10 birth cohorts.
        J Epidemiol Community Health. 2011; 65: 503-510
        • Valicenti-McDermott M.
        • Hottinger K.
        • Seijo R.
        • Shulman L.
        Age at diagnosis of autism spectrum disorders.
        J Pediatr. 2012; 161: 554-556
        • Mandell D.S.
        • Listerud J.
        • Levy S.E.
        • Pinto-Martin J.A.
        Race differences in the age at diagnosis among Medicaid-eligible children with autism.
        J Am Acad Child Adolesc Psychiatry. 2002; 41: 1447-1453
        • Liptak G.S.
        • Benzoni L.B.
        • Mruzek D.W.
        • 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: 152-160
        • Palmer R.F.
        • Walker T.
        • Mandell D.
        • et al.
        Explaining low rates of autism among Hispanic schoolchildren in Texas.
        Am J Public Health. 2010; 100: 270-272
        • Magaña S.
        • Smith L.E.
        The use of the Autism Diagnostic Interview–Revised with a Latino population of adolescents and adults with autism.
        J Autism Dev Disord. 2013; 43: 1098-1105
        • Zuckerman K.E.
        • Mattox K.
        • Baghaee A.
        • et al.
        Pediatrician identification of Latino children at risk for autism spectrum disorder.
        Pediatrics. 2013; 132: 445-453
        • Flores G.
        • Committee on Pediatric Research
        Technical report—racial and ethnic disparities in the health and health care of children.
        Pediatrics. 2010; 125: e979-e1020
        • Broder-Fingert S.
        • Shui A.
        • Pulcini C.D.
        • et al.
        Racial and ethnic differences in subspecialty service use by children with autism.
        Pediatrics. 2013; 132 (erratum in Pediatrics. 2013;132:780): 94-100
        • Harstad E.
        • Huntington N.
        • Bacic J.
        • Barbaresi W.
        Disparity of care for children with parent-reported autism spectrum disorders.
        Acad Pediatr. 2013; 13: 334-339
        • Bornstein M.H.
        • Cote L.R.
        “Who is sitting across from me?” Immigrant mothers’ knowledge of parenting and children’s development.
        Pediatrics. 2004; 114: e557-e564
        • Pachter L.M.
        • Dworkin P.H.
        Maternal expectations about normal child development in 4 cultural groups.
        Arch Pediatr Adolesc Med. 1997; 151: 1144-1150
        • Keels M.
        Ethnic group differences in early Head Start parents’ parenting beliefs and practices and links to children’s early cognitive development.
        Early Child Res Q. 2009; 24: 381-397
        • Pope C.
        • Ziebland S.
        • Mays N.
        Qualitative research in health care. Analysing qualitative data.
        BMJ. 2000; 320: 114-116
        • Maxwell J.A.
        Qualitative Research Design: An Interactive Approach.
        2nd ed. Sage Publications, Thousand Oaks, Calif2005
      1. Zuckerman KE, Mattox KM, Sinche BK, et al. Racial, ethnic, and language disparities in early childhood developmental/behavioral evaluations: a narrative review. Clin Pediatr (Phila) In press.

        • Marín G.
        • Sabogal F.
        • VanOss Marín B.
        • Otero-Sabogal F.
        • Pérez-Stable E.J.
        Development of a short acculturation scale for Hispanics.
        Hispanic Journal of Behavioral Sciences. 1987; 9: 183
        • Braun V.
        • Clarke V.
        Using thematic analysis in psychology.
        Qual Res Psychol. 2006; 3: 77-101
        • Torres J.B.
        • Solberg V.S.
        • Carlstrom A.H.
        The myth of sameness among Latino men and their machismo.
        Am J Orthopsychiatry. 2002; 72: 163-181
        • Magaña S.
        • Lopez K.
        • Aguinaga A.
        • Morton H.
        Access to diagnosis and treatment services among Latino children with autism spectrum disorders.
        Intellect Dev Disabil. 2013; 51: 141-153
        • Sontag J.C.
        • Schacht R.
        An ethnic comparison of parent participation and information needs in Early Intervention.
        Except Child. 1994; 60: 422
        • Bussing R.
        • Schoenberg N.E.
        • Perwien A.R.
        Knowledge and information about ADHD: evidence of cultural differences among African-American and white parents.
        Soc Sci Med. 1998; 46: 919-928
        • McKay M.M.
        • Pennington J.
        • Lynn C.J.
        • McCadam K.
        Understanding urban child mental health service use: two studies of child, family, and environmental correlates.
        J Behav Health Serv Res. 2001; 28: 475-483
        • Bethell C.
        • Reuland C.H.
        • Halfon N.
        • Schor E.L.
        Measuring the quality of preventive and developmental services for young children: national estimates and patterns of clinicians’ performance.
        Pediatrics. 2004; 113: 1973-1983
        • Guerrero A.D.
        • Chen J.
        • Inkelas M.
        • et al.
        Racial and ethnic disparities in pediatric experiences of family-centered care.
        Med Care. 2010; 48: 388-393
        • Flores G.
        • Tomany-Korman S.C.
        Racial and ethnic disparities in medical and dental health, access to care, and use of services in US children.
        Pediatrics. 2008; 121: e286-e298
        • Zuckerman K.E.
        • Perrin J.M.
        • Hobrecker K.
        • Donelan K.
        Barriers to specialty care and specialty referral completion in the community health center setting.
        J Pediatr. 2013; 162: 409-414.e1
        • Jimenez M.E.
        • Barg F.K.
        • Guevara J.P.
        • et al.
        Barriers to evaluation for early intervention services: parent and early intervention employee perspectives.
        Acad Pediatr. 2012; 12: 551-557
      2. Cooper LA, Powe NR; Commonwealth Fund Report. Disparities in patient experiences, health care processes, and outcomes: the role of patient–provider racial, ethnic, and language concordance. Available at:–Health-Care-Processes–and-Outcomes–The-Role-of-Patient-Provide.aspx. Accessed December 16, 2013.

      3. Centers for Disease Control and Prevention (CDC). Learn the signs. Act early. Available at: Accessed December 16, 2013.

        • Pinto-Martin J.A.
        • Dunkle M.
        • Earls M.
        • et al.
        Developmental stages of developmental screening: steps to implementation of a successful program.
        Am J Public Health. 2005; 95: 1928-1932