Growing up with Autism: The Sibling Experience

1. Growing up with Autism: The Sibling Experience By: Victoria Carrillo California State University Long Beach School of Social Work May 2012

2. Problem Statement and Purpose of Study • Over the past twenty years, researchers have concentrated on the impact autism has on family members and have concluded that caring for a child with Autism places high levels of stress on the family system (Weiss & Lunsky, 2011) • In an effort to understand the impact that it has on siblings this study addressed the following questions: • What challenges do siblings experience growing up with an autistic brother or sister? • What strategies do siblings use to help them cope with the challenges of growing up with an autistic brother or sister?

3. Social Work Relevance • Autism is considered the second most serious developmental disability (Newschaffer et al., 2007) and one that currently affects 673, 000 American children (Kogan et al., 2009) • As the number of families affected by ASD continues to increase, the demand for social services increases • This study offers social workers with research-supported information on the needs of nondisabled siblings growing up with a brother or sister with autism. Ultimately, it provides social workers with the necessary information to better address the needs of siblings who care for and are residing with a sibling diagnosed under the autism spectrum

4. Cross-cultural Relevance • Findings illustrate Autism affects all ethnic groups regardless of an individual’s socioeconomic status or education • In 2007, the California Department of Developmental Services (CDDS) found that individuals who identified as White and Hispanic showed the greatest increase in numbers affected by Autism in the past 20 years (CDDS, 2007) • According to CDDS, those who identified themselves as White constitute 43.4% of all persons served by CDDS; Hispanics constitute 35.8, Asians 11.7% , Blacks 6.0% and those who identified themselves as other constitute 3.1%

5. Methods • Research Design: An exploratory design, using a qualitative interview approach, was used to examine the sibling experience of living with a brother or sister diagnosed with autism spectrum disorder • Sampling Method: 12 Participants were chosen through nonprobability, snowball sampling method • Sample: Participants who met the criteria for an interview were typically developing siblings, who had (1) a sibling under the autism spectrum disorder and (2) were 18 years or older; and (3) had resided with their sibling for at least one year

6. Methods • Data Collection Procedures: Interviews were conducted in the participant’s home or via telephone • Variables and Instruments: A semi-structured interview guide was used to facilitate the interview; probing was used when necessary. The guide contained 17 open-ended questions designed to capture the individual stories of each participant • Data Analysis: upon completion of transcription, the researcher looked for common themes that emerged during the interviews. The analysis focused on identifying the patterns of life experiences, the range of emotions, and coping styles associated with the sibling experience

7. Results Demographics: • Participants age group ranged from 18-31 years • The majority of participants identified themselves as Caucasian (7 or 57.3%), other ethnic groups represented include African American (3 or 25%) and Hispanic (2 or 16.7%) • In terms of participants’ marital status, 11 (92%) were single and 1 (8.3%) reported being married • In this study, 9 (or 75%) reported having some college, 2 (or 16.7%) had a college degree, and 1 (or 8.3%) were high school graduates.

8. Results derived from in-depth interviews • The in-depth interviews produced themes relating to differential parental treatment, challenges experienced in childhood and adolescence, concern regarding siblings’ future, coping strategies, and positivity experienced by siblings. Some of the challenges and impact experienced involved school, family functions, social life, and psychological wellbeing • During adolescent years, participants reported changes in family routines (41.7%), bullying at school (16.7%), difficulty with time management and self-care (33.0%) and experienced sadness about sibling’s limitations (42%). • Participants also reported positive experiences; 57.3% reported an increase in awareness of autism spectrum disorders and 50% reported an increased tolerance/consideration for people with disabilities • Coping strategies used by participants include: practicing self-care (83.3%), seeking help from family (57.3%) and friends (42.7%), and learning to accept siblings’ condition and limitations (57.3%)

9. Implications for Social Work • Due to the growing number of families affected by autism, it is imperative for families to fully understand the diagnosis, the implications associated with autism and the interventions and services that are currently available • Social workers will need to monitor the psychological well-being of all family members and advocate for sibling and parent support groups • Finding creative ways of incorporating services that families can both enjoy and be a part of will be essential when engaging the entire family unit in support groups

10. References Weiss, J., & Lunsky, Y. (2011). The Brief Family Distress Scale: A measure of crisis in caregivers of individuals with autism spectrum disorders. Journal of Child & Family Studies, 20 (4), 521-528. Kogan, M.D., Blumberg, S.J., Schieve, L.A., Boyle, C.A., Perrin, J.M., Ghandour, R.M., & . . . Van Dyck, P.C. (2009). Prevalence of parent-reported diagnosis of autism spectrum disorder among children in the US, 2007. Pediatrics, 124 (5), 1395-1403. California Department of Developmental Services (2007). Autistic spectrum disorders: Changes in the California caseload an update: June 1987-June 2007. Department of Developmental Service, California Health and Human Services Agency. Retrieved December 22, 2011 from http://www.dds.ca.gov