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Cultural Influences on Sibling Relationships, Roles, and Self-Concept in the Context of Autism: Perspectives of Latino/a/x and non-Latino/a/x Siblings

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Abstract

Siblings describe positive and negative aspects of autism and often assume lifelong support roles. Less is known about cultural influences on sibling relationships. This qualitative study characterizes processes linking siblings’ autism conceptualizations, sibling relationships, and self-concept using a multicultural framework. Siblings (12 Latino/a/x, 9 non-Latino/a/x white) participated. Data were stratified by ethnicity and analyzed using applied thematic analysis. Latino/a/x and non-Latino/a/x siblings described processes linking autism, relationships, and self-concept differently. Latino/a/x siblings emphasized family roles and identified as caregivers and protectors. Non-Latino/a/x siblings emphasized general sensitivity toward individuals who differed from themselves. Findings may reflect cultural differences in familism, caregiving expectations, and autism conceptualizations, thereby illuminating foundations of siblings’ lifelong caregiving roles and highlighting the importance of culturally-sensitive, family-centered care.

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Notes

  1. We use the term “individuals on the autism spectrum” as the middle ground between person-first language (i.e., “individual with autism” as recommended by the APA style guide) and identity-first language (i.e., “autistic individual” as preferred by autistic self-advocates) (Kenny et al., 2016).

  2. We use the term Latino/a/x to encompass both gender-inclusive language (i.e., Latinx) as well as the more traditional Latino/a language that is more commonly used and/or preferred by members of this ethnic group (Noe-Bustamante et al., 2020; Salinas, 2020).

References

  • Angell, A. M., Empey, A., & Zuckerman, K. E. (2018). A review of diagnosis and service disparities among children with autism from racial and ethnic minority groups in the United States. In International review of research in developmental disabilities (Vol. 55, pp. 145–180). Academic Press.

  • American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders: DSM-5 (5th ed.). American Psychiatric Association.

  • Bamm, E. L., & Rosenbaum, P. (2008). Family-centered theory: Origins, development, barriers, and supports to implementation in rehabilitation medicine. Archives of Physical Medicine and Rehabilitation, 89(8), 1618–1624.

    Article  PubMed  Google Scholar 

  • Beffel, J. H., & Nuttall, A. K. (2020). Influences of parentification and benefit finding on prosocial behavior among typically develo** siblings of individuals with autism spectrum disorder. Research in Developmental Disabilities, 104, 103694.

    Article  PubMed  Google Scholar 

  • Bornstein, M. H. (2012). Cultural approaches to parenting. Parenting, Science and Practice, 12, 212–221.

    Article  PubMed  PubMed Central  Google Scholar 

  • Bronfenbrenner, U. (1977). Toward an experimental ecology of human development. American Psychologist, 32(7), 513.

    Article  Google Scholar 

  • Burke, M. M., Arnold, C. K., & Owen, A. L. (2015). Sibling advocacy: Perspectives about advocacy from siblings of individuals with intellectual and developmental disabilities. Inclusion, 3(3), 162–175.

    Article  Google Scholar 

  • Burke, M. M., Taylor, J. L., Urbano, R., & Hodapp, R. M. (2012). Predictors of future caregiving by adult siblings of individuals with intellectual and developmental disabilities. American Journal Intellectual and Developmental Disabilities, 117(1), 33–47.

    Article  Google Scholar 

  • Cho, S., Crenshaw, K. W., & McCall, L. (2013). Toward a field of intersectionality studies: Theory, applications, and praxis. Signs: Journal of Women in Culture and Society., 38(4), 785–810.

    Article  Google Scholar 

  • Clauss-Ehlers, C. S., Chiriboga, D. A., Hunter, S. J., Roysircar, G., & Tummala-Narra, P. (2019). APA Multicultural Guidelines executive summary: Ecological approach to context, identity, and intersectionality. American Psychologist, 74(2), 232–244.

    Article  PubMed  Google Scholar 

  • Corsano, P., Musetti, A., Guidotti, L., & Capelli, F. (2017). Typically develo** adolescents’ experience of growing up with a brother with an autism spectrum disorder. Journal of Intellectual & Developmental Disability, 42(2), 151–161.

    Article  Google Scholar 

  • Cridland, E. K., Jones, S. C., Magee, C. A., & Caputi, P. (2014). Family-focused autism spectrum disorder research: A review of the utility of family systems approaches. Autism, 18(3), 213–222.

    Article  PubMed  Google Scholar 

  • D’Arcy, F., Flynn, J., McCarthy, Y., O’Connor, C., & Tierney, E. (2005). Sibshops: An evaluation of an interagency model. Journal of Intellectual Disabilities, 9(1), 43–57.

    Article  PubMed  Google Scholar 

  • Epstein, N. B., Bishop, D. S., & Levin, S. (1978). The McMaster model of family functioning. Journal of Marital and Family Therapy, 4(4), 19–31.

    Article  Google Scholar 

  • Feinberg, M. E., Solmeyer, A. R., & McHale, S. M. (2012). The third rail of family systems: Sibling relationships, mental and behavioral health, and preventive intervention in childhood and adolescence. Clinical Child and Family Psychology Review, 15(1), 43–57.

    Article  PubMed  PubMed Central  Google Scholar 

  • Goldstein, S., & Naglieri, J. A. (2009). Autism Spectrum Rating Scales (ASRS). Multi-Health System.

    Google Scholar 

  • Gordillo, M. L., Chu, A., & Long, K. A. (2020). Mothers’ adjustment to autism: Exploring the roles of autism knowledge and culture. Journal of Pediatric Psychology, 45(8), 877–886.

    Article  PubMed  Google Scholar 

  • Gorjy, R. S., Fielding, A., & Falkmer, M. (2017). ‘It’s better than it used to be’: Perspectives of adolescent siblings of children with an autism spectrum condition. Child & Family Social Work, 22, 1488–1496.

    Article  Google Scholar 

  • Guest, G., MacQueen, K. M., & Namey, E. E. (2011). Applied Thematic Analysis. Sage Publications.

    Google Scholar 

  • Interagency Autism Coordinating Committee. (2019). 2016–2017 Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder.

  • Jones, E. A., Fiani, T., Stewart, J. L., Sheikh, R., Neil, N., & Fienup, D. M. (2019). When one sibling has autism: Adjustment and sibling relationship. Journal of Child and Family Studies, 28(5), 1272–1282.

    Article  Google Scholar 

  • Kao, B., Romero-Bosch, L., Plante, W., & Lobato, D. (2012). The experiences of Latino siblings of children with developmental disabilities. Child: Care, Health, and Development, 38(4), 545–552.

    Article  Google Scholar 

  • Kazak, A. E. (1989). Families of chronically ill children: A systems and social-ecological model of adaptation and challenge. Journal of Consulting and Clinical Psychology, 57(1), 25–30.

    Article  PubMed  Google Scholar 

  • Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., & Pellicano, E. (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism, 20(4), 442–462.

    Article  PubMed  Google Scholar 

  • King, M., Ruggles, S., Alexander, J. T., Flood, S., Genadek, K., Schroeder, M. B., Trampe, B., & Vick, R. (2010). Integrated public use microdata series, current population survey: Version 3.0. [machine-readable database]. University of Minnesota, 20.

  • Kramer, L., Conger, K. J., Rogers, C. R., & Ravindran, N. (2019). Siblings. In B. Fiese (Ed.), APA Handbook of Contemporary Family Psychology (pp. 521–538). American Psychological Association.

    Google Scholar 

  • Kryzak, L. A., Cengher, M., Feeley, K. M., Fienup, D. M., & Jones, E. A. (2015). A community support program for children with autism and their typically develo** siblings: Initial investigation. Journal of Intellectual Disabilities, 19(2), 159–177.

    Article  PubMed  Google Scholar 

  • La Roche, M. J., Bush, H. H., & D’Angelo, E. (2018). The assessment and treatment of autism spectrum disorder: A cultural examination. Practice Innovations, 3(2), 107–122.

    Article  Google Scholar 

  • Lauderdale-Littin, S., & Blacher, J. (2017). Young adults with severe intellectual disability: Culture, parent, and sibling impact. Journal of Intellectual and Developmental Disability, 42(3), 230–239.

    Article  Google Scholar 

  • Lee, C. E., Hagiwara, M., & Black, H. (2021). A sco** review of cross-cultural experiences of siblings of individuals with intellectual and developmental disabilities in the United States. Research in Developmental Disabilities, 112, 1916.

    Article  Google Scholar 

  • Lobato, D., Kao, B., Plante, W., Seifer, R., Grullon, E., Cheas, L., & Canino, G. (2011). Psychological and school functioning of Latino siblings of children with intellectual disability. Journal of Child Psychology and Psychiatry, 52(6), 696–703.

    Article  PubMed  Google Scholar 

  • Lobato, D. J., & Kao, B. T. (2002). Integrated sibling-parent group intervention to improve sibling knowledge and adjustment to chronic illness and disability. Journal of Pediatric Psychology, 27(8), 711–716.

    Article  PubMed  Google Scholar 

  • Lobato, D. J., & Kao, B. T. (2005). Brief report: Family-based group intervention for young siblings of children with chronic illness and developmental disability. Journal of Pediatric Psychology, 30(8), 678–682.

    Article  PubMed  Google Scholar 

  • Long, K., & Alderfer, M. (2020). Where are siblings of children with specific health care needs in family-centered care? The Clinical Psychologist, 73(1), 5–11.

    Google Scholar 

  • Long, K. A., Gordillo, M., & Orsmond, G. I. (2020). Improving the validity and generalizability of adult autism research through incorporating family and cultural contexts. Autism in Adulthood, 2(3), 177–184.

    Article  PubMed  PubMed Central  Google Scholar 

  • Long, K. A., Lobato, D., Kao, B., Plante, W., Grullón, E., Cheas, L., Houck, C., & Seifer, R. (2013). Perceptions of emotion expression and sibling–parent emotion communication in Latino and non-Latino white siblings of children with intellectual disabilities. Journal of Pediatric Psychology, 38(5), 551–562.

    Article  PubMed  PubMed Central  Google Scholar 

  • Lopez, K., Magaña, S., Xu, Y., & Guzman, J. (2018). Mother’s Reaction to Autism Diagnosis: A Qualitative Analysis Comparing Latino and White Parents. Journal of Rehabilitation; Alexandria, 84(1), 41–50

  • Magaña, S., & Smith, M. J. (2006). Psychological distress and well–being of Latina and non–Latina white mothers of youth and adults with an autism spectrum disorder: Cultural attitudes towards coresidence status. American Journal of Orthopsychiatry, 76(3), 346–357.

    Article  PubMed  Google Scholar 

  • Maenner, M. J., Shaw, K. A., & Baio, J. (2020). Prevalence of autism spectrum disorder among children aged 8 years—Autism and developmental disabilities monitoring network, 11 sites, United States, 2016. MMWR Surveillance Summaries, 69(4), 1.

    Article  PubMed Central  Google Scholar 

  • Mandleco, B., & Webb, A. E. (2015). Sibling perceptions of living with a young person with Down syndrome or autism spectrum disorder: An integrated review. Journal for Specialists in Pediatric Nursing, 20(3), 138–156.

    Article  PubMed  Google Scholar 

  • McHale, S. M., Updegraff, K. A., & Feinberg, M. E. (2016). Siblings of youth with autism spectrum disorders: Theoretical perspectives on sibling relationships and individual adjustment. Journal of Autism and Developmental Disorders, 46(2), 589–602.

    Article  PubMed  PubMed Central  Google Scholar 

  • McHale, S. M., Updegraff, K. A., & Whiteman, S. D. (2012). Sibling relationships and influences in childhood and adolescence. Journal of Marriage and the Family, 74(5), 913–930.

    Article  PubMed  PubMed Central  Google Scholar 

  • Meadan, H., Stoner, J. B., & Angell, M. E. (2010). Review of literature related to the social, emotional, and behavioral adjustment of siblings of individuals with autism spectrum disorder. Journal of Developmental and Physical Disabilities, 22(1), 83–100.

    Article  Google Scholar 

  • Morse, J. (1995). The significance of saturation. Qualitative Health Research, 5, 147–149.

    Article  Google Scholar 

  • Noe-Bustamante, L., Mora, L., & Lopez, H. (2020). About one-in-four US Hispanics have heard of Latinx, but just 3% use it. Pew Research Center.

  • Nuttall, A. K., Coberly, B., & Diesel, S. J. (2018). Childhood caregiving roles, perceptions of benefits, and future caregiving intentions among typically develo** adult siblings of individuals with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48(4), 1199–1209.

    Article  PubMed  Google Scholar 

  • Orsmond, G., & Long, K. A. (2020). Family impact and adjustment across the lifespan: Siblings of individuals with intellectual and developmental disabilities. In L. Glidden (Ed.), APA Handbook of Intellectual and Developmental Disabilities. American Psychological Association.

  • Petalas, M. A., Hastings, R. P., Nash, S., Dowey, A., & Reilly, D. (2009). “I like that he always shows who he is”: The perceptions and experiences of siblings with a brother with autism spectrum disorder. International Journal of Disability, Development and Education, 56(4), 381–399.

    Article  Google Scholar 

  • Petalas, M. A., Hastings, R. P., Nash, S., & Duff, S. (2015). Typicality and subtle difference in sibling relationships: Experiences of adolescents with autism. Journal of Child and Family Studies, 24(1), 38–49.

    Article  Google Scholar 

  • Petalas, M. A., Hastings, R. P., Nash, S., Reilly, D., & Dowey, A. (2012). The perceptions and experiences of adolescent siblings who have a brother with autism spectrum disorder. Journal of Intellectual and Developmental Disabilities, 37(4), 303–314.

    Article  Google Scholar 

  • Peterson, G. W., & Bush, K. R. (2013). Conceptualizing cultural influences on socialization: Comparing parent-adolescent relationships in the United States and Mexico. In G. Peterson, K. Bush (Eds). Handbook of Marriage and the Family. Boston: Springer.

  • Phillips, R. S. (1999). Intervention with siblings of children with developmental disabilities from economically disadvantaged families. Families in Society, 80(6), 569–577.

    Article  Google Scholar 

  • QSR. (2012). NVivo qualitative data analysis software, Version 10. QSR International Pty Ltd.

  • Rossiter, L., & Sharpe, D. (2001). The siblings of individuals with mental retardation: A quantitative integration of the literature. Journal of Child and Family Studies, 10(1), 65–84.

    Article  Google Scholar 

  • Sabogal, F., Marín, G., Otero-Sabogal, R., Marín, B. V., & Perez-Stable, E. J. (1987). Hispanic familism and acculturation: What changes and what doesn’t? Hispanic Journal of Behavioral Sciences, 9(4), 397–412.

    Article  Google Scholar 

  • Sage, K. D., & Jegatheesan, B. (2010). Perceptions of siblings with autism and relationships with them: European American and Asian American siblings draw and tell. Journal of Intellectual and Developmental Disability, 35(2), 92–103.

    Article  PubMed  Google Scholar 

  • Salinas, C., Jr. (2020). The complexity of the “x” in Latinx: How Latinx/a/o students relate to, identify with, and understand the term Latinx. Journal of Hispanic Higher Education, 19(2), 149–168.

    Article  Google Scholar 

  • Shivers, C. M., & Plavnick, J. B. (2015). Sibling involvement in interventions for individuals with autism spectrum disorders: A systematic review. Journal of Autism and Developmental Disorders, 45(3), 685–696.

    Article  PubMed  Google Scholar 

  • Smith, T., & Perry, A. (2005). A sibling support group for brothers and sisters of children with autism. Journal on Developmental Disabilities, 11(1), 77–88.

    Google Scholar 

  • Tomeny, T. S., Barry, T. D., Fair, E. C., & Riley, R. (2017). Parentification of adult siblings of individuals with autism spectrum disorder. Journal of Child and Family Studies, 26(4), 1056–1067.

    Article  Google Scholar 

  • Tozer, R., Atkin, K., & Wenham, A. (2013). Continuity, commitment and context: Adult siblings of people with autism plus learning disability. Health and Social Care in the Community, 21(5), 480–488.

    Article  PubMed  Google Scholar 

  • Tsai, H. W. J., Cebula, K., Liang, S. H., & Fletcher-Watson, S. (2018). Siblings’ experiences of growing up with children with autism in Taiwan and the United Kingdom. Research in Developmental Disabilities, 83, 206–216.

    Article  PubMed  Google Scholar 

  • Tudor, M. E., Rankin, J., & Lerner, M. D. (2018). A model of family and child functioning in siblings of youth with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48(4), 1210–1227.

    Article  PubMed  Google Scholar 

  • Umaña-Taylor, A. J., & Updegraff, K. A. (2013). Latino families in the United States. In Handbook of marriage and the family (pp. 723–747). Springer.

  • United States Census Bureau. (2017). American Community Survey 3-year Public Use Microdata Samples. Retrieved from https://www.census.gov/programs-surveys/acs/data.html

  • Updegraff, K. A., McHale, S. M., Killoren, S. E., & Rodríguez, A. S. (2010). Cultural variations in sibling relationships. In J. Caspi (Ed.), Siblings Development: Implications for mental health practitioners (pp. 83–106). Springer.

    Google Scholar 

  • Updegraff, K. A., McHale, S. M., Whiteman, S. D., Thayer, S. M., & Delgado, M. Y. (2005). Adolescent sibling relationships in Mexican American families: Exploring the role of familism. Journal of Family Psychology, 19(4), 512–522.

    Article  PubMed  PubMed Central  Google Scholar 

  • Updegraff, K. A., Umaña-Taylor, A. J., Rodríguez De Jesús, S. A., McHale, S. M., Feinberg, M. F., & Kuo, S. I. (2016). Family-focused prevention with Latinos: What about sisters and brothers? Journal of Family Psychology, 30(5), 633–640.

    Article  PubMed  Google Scholar 

  • Walton, K. M., & Ingersoll, B. R. (2015). Psychosocial adjustment and sibling relationships in siblings of children with autism spectrum disorder: Risk and protective Factors. Journal of Autism and Developmental Disorders, 45(9), 2764–2778.

    Article  PubMed  Google Scholar 

  • Zuckerman, K. E., Sinche, B., Mejia, A., Cobian, M., Becker, T., & Nicolaidis, C. (2014). Latino parents’ perspectives of barriers to autism diagnosis. Academic Pediatrics, 14(3), 301–308.

    Article  PubMed  PubMed Central  Google Scholar 

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Acknowledgments

This research was funded by the Society for Pediatric Psychology Diversity Research Grant (PI: Kristin Long). We would like to acknowledge Ms. Valencia Simon for her work on this project.

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Author notes

  1. Lydia Chevalier

    Present address: Dana Farber Cancer Institute, Boston, MA, USA

Authors and Affiliations

  1. Boston University, Boston, MA, USA

    Kristin A. Long & Lydia Chevalier

  2. Boston Medical Center, Boston, MA, USA

    Andrea Chu

  3. Alpert Medical School of Brown University, Providence, RI, USA

    Kate M. Guthrie, Barbara Kao, Wendy Plante & Debra Lobato

  4. The Miriam Hospital, Providence, RI, USA

    Kate M. Guthrie

  5. Rhode Island Hospital/Hasbro Children’s Hospital, Providence, RI, USA

    Barbara Kao, Wendy Plante & Debra Lobato

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  1. Kristin A. Long
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Contributions

KL, KG, BK, DL, and WP contributed to the study conceptualization and design. KL conducted all qualitative interviews. KL, AC, and LC coded the qualitative transcripts. KL led the applied thematic analysis, with input from all authors. All authors reviewed and edited the final version of the manuscript.

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Correspondence to Kristin A. Long.

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Long, K.A., Chevalier, L., Chu, A. et al. Cultural Influences on Sibling Relationships, Roles, and Self-Concept in the Context of Autism: Perspectives of Latino/a/x and non-Latino/a/x Siblings. J Autism Dev Disord 52, 4100–4113 (2022). https://doi.org/10.1007/s10803-021-05287-z

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