Factors of Acceptance and Quality of Life: the experience of Autism Spectrum Disorder (ASD) in the Asian Indian community Público
Sasidharen, Aishwarya (Spring 2020)
Abstract
Background: Autism Spectrum Disorder (ASD) is a neurological disorder that impedes the social and communication development of a child. According to the Centers for Disease Control and Prevention, 1/59 children in the United States (U.S.) were diagnosed with ASD based on 2014 data of 8-year-olds. Although numerous studies indicate the benefits of early interventions for children at risk for ASD, many families access these services after the child has surpassed critical developmental milestones. ASD impacts all racial/ethnic groups equally; however, few studies assess the role of cultural beliefs on the family’s experience with having a member with ASD. Due to stigma in some cultural communities, some families are less likely to share their concerns with others to avoid shame and humiliation. Limited studies assess the influence of culture on Asian families who have a family member with ASD. However, numerous findings indicate that stigma towards mental illness exists in many Asian communities. Furthermore, a paucity of literature exists regarding the implications of culture in the process of acceptance and the day-to-day life of Asian Indian families in the U.S. affected by ASD.
Objectives: This study aims to explore the impacts of cultural perceptions on Asian Indian mothers’ acceptance of the child’s diagnosis, lifestyle choices, and relationship with the cultural community.
Methods: Semi-structured qualitative interviews were conducted with Asian Indian mothers who have ASD-diagnosed children (N= 20). Interview domains focused on mothers’ experience of having a child with ASD, day-to-day life experiences, and experience with Indian culture. All audio-recorded interviews were transcribed verbatim to implement a thematic analysis via MaxQDA software.
Results: Three main themes emerged from the data: family as a central role, the role of social expectations, and lack of awareness. All participants considerably followed some level of kinship, and this priority towards family made them act on their child’s best interest. Moreover, this priority of the child overshadowed these participants’ need to fulfill societal expectations and changed focus from developing their child’s academic abilities to improving their child’s independent living skills. Contrarily, some mothers expressed that many Asian Indian families affected by ASD are concerned about meeting societal expectations that are measured by academic achievements, job opportunities, and income. Therefore, participants discussed how families of the Indian community might not share their concerns about their child due to fear of ostracization. Additionally, these mothers stated that lack of awareness in their healthcare, cultural, and social community discouraged them from sharing their concerns and finding adequate resources for their child.
Conclusion: These findings support the need to expand further current outreach models to incorporate cultural context to spread awareness of ASD in various cultural communities. Future research can assess the indication of cultural perceptions and stigma in the choices of families from multicultural communities in the U.S. who are affected by ASD.
Table of Contents
Table of Contents
Chapter I: Introduction 1
Chapter II: Literature Review 5
Chapter III: Student Contributions 27
Chapter IV: Manuscript Submissions 31
Chapter V: Public Health Implications 59
References 66
Appendix I: Interview Guide 77
Appendix II: Consent Form 81
Appendix III: Recruitment Documents 83
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