Autism through the eyes of the Latino community is discussed.
By K. Long
The 2013 SPP Diversity Research Grant funded a pilot project examining cultural influences on siblings’ adjustment to a brother’s or sister’s autism diagnosis. The current study focuses on siblings of children with autism due to the salience of autism as a public health priority and the pronounced effects of autism on the family’s day-to-day functioning and emotional climate (Dyches, Wilder, Sudweeks, Obiakor, & Algonzzine, 2004).
Pediatric psychology has taken an increasingly family-focused approach to its clinical and research initiatives (Society of Pediatric Psychology, 2012). Stressors associate with childhood illnesses and disabilities often disrupt family functioning, with effects extending to siblings. Although many siblings of children with pediatric diagnoses function well, siblings are at risk for increased distress and poor adjustment to their brother’s or sister’s condition (Vermaes, van Susante, & van Bakel, 2012).
A major gap in the literature examining family or sibling functioning is the lack of attention to cultural factors. A small body of work suggests that Latino siblings of children with autism have a greater risk of adjustment difficulties than their non-Latino white counterparts, independently of socio-economic status (Lobato et al., 2011). The reasons for this remain unclear. Collectivist, family-oriented values may influence how autism is understood and integrated into daily life by decreasing reliance on outside support and increasing the family’s role in autism management. This has implications for siblings’ caretaking responsibilities throughout the lifespan.
To explore the intersection of culture, autism, and families, the current mixed-methods study of Latino and non-Latino white siblings of children with autism examines:
- Cultural values in relation to siblings’ experiences of autism.
- Siblings’ personal adjustment and internalizing symptoms.
Twenty (10 Latino, 10 non-Latino whites) 8- to 17-year-old siblings of children with autism were enrolled between Aug. 2013 and April 2014. English- and Spanish-speaking families were recruited through:
- Direct service providers and clinics that serve diverse families of children with autism.
- Autism-focused community events.
Data collection occurred in participants’ homes (75 percent) or the research office (25 percent).
Siblings completed 45- to 60-minute qualitative interviews assessing:
- How autism is understood and experienced by the family.
- The meaning of autism and whether it is appraised as positive, negative or neutral.
- Family communication about involvement in future autism management.
Parents and siblings completed quantitative measures of siblings’ personal adjustment and emotional/behavioral functioning (Achenbach, 1991; Reynolds & Kamphaus, 2004). To increase power, quantitative data will be combined with existing sibling data.
This work is embedded within a larger research program examining relationships among illness/disability, culture, and family and sibling functioning. Findings from this study will inform the design of culturally sensitive interventions to support siblings and families of children with chronic conditions and improve family-based illness management.
- Achenbach T. (1991). Manual for the Child Behavior Checklist/4 – 18 and 1991 Profile, Burlington, VT: University of Vermont Department of Psychiatry.
- Dyches, T.T., Wilder, L.K., Sudweeks, R.R., Obiakor, F.E., Algonzzine, B. (2004). Multicultural issues in autism. J Autism Dev Disord, 34, 211-22.
- 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. J Child Psycholog Psychiatry, 52, 696-703.
- Reynolds, C.R., & Kamphaus, R.W. (2004). Behavior assessment system for children (2nd ed.). Circle Pines, MN: American Guidance Service, Inc.
- Society of Pediatric Psychology. Bylaws (PDF, 408KB). (2012). Retrieved May 1, 2014.
- Vermaes, I.P.R., van Susante, A.M.J., & van Bakel, J.A. (2012). Psychological functioning of Latino siblings of children with chronic health conditions: A meta-analysis. J Pediatr Psychol, 37, 166-184.