Taking off the mask: autistic young women's experiences with social skills in high school
Date
2019
Authors
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Publisher
University of Delaware
Abstract
This dissertation study explores adolescent socialization experiences and understandings of autistic identity from the perspectives of four autistic young women. Stemming from a concerning disproportionate gender representation of autism, with males diagnosed at the rate of 1 in 39 and females at 1 in 151 (Center for Disease Control and Prevention, 2018), this study is, in part, a response to the autism research community’s call for more research to support the needs of autistic girls and young women and increased understanding of their experiences (Shefcyk, 2015). Additionally, autistic women tend to be diagnosed later in life and may be misdiagnosed with other mental health illnesses due to masking and imitation of social skills (Tierney, Burns, & Kilby, 2016; Jamison & Schuttler, 2015). ☐ Two research questions are asked in this study: 1. What are the perspectives of adolescent autistic students who identify as female, girl, or young woman on their experiences learning and using social skills in high school? and, 2. How does the ongoing work of learning social skills at school, through instruction and otherwise, contribute to students’ perspectives on the development of an autistic/disability identity? This phenomenological dissertation study explores the school-based experiences of autistic adolescent young woman as they learn social skills and understand the nuances of learning social skills from their perspectives. The findings will yield valuable insights applicable to families and practitioners working with this under-researched population to improve transition experiences and outcomes. ☐ At school, autistic teens are supported with myriad social skills interventions, ranging from focused intervention practices and comprehensive treatment models (Odom, Boyde, Hall, & Hume, 2010), to curriculum-based (Laugeson et al., 2014; Crooke & Winner, n.d.), and peer-inclusive interventions (Bottema-Beutel, Mullins, Harvey, Gustafson, & Carter, 2015; Diener et al., 2015; Hochman et al., 2015). Such school-based interventions have several implications regarding the development of autistic identity (Connor, 2013; Baines, 2012; Bagatell, 2007/2010; Zambo, 2010). The concept of autistic identity has been linked to the use of identity-first language (Sinclair, 1993), the understanding of the neurodiversity paradigm (Kapp, Gillespie-Lynch, Sherman, and Hutman, 2014; Ortega, 2009), the awareness of autistic communities (Bagatell, 2010; Sinclair, 2010), and autistic culture (Straus, 2010). These concepts rarely have been the focus of school-based studies involving autistic adolescents and deserve further scrutiny. ☐ This study applies the frameworks of disability studies in education, feminist disability studies, and critical autism studies to the qualitative social skills experiences of autistic adolescent girls. Disability studies in education uncover facets of disability residing outside the scope of the individual and seek to better understand individual experiences from the sociocultural perspective (Connor et al., 2008). Feminist disability studies apply a gendered understanding of disability identity to research (Garland-Thompson, 2011). Critical autism studies promote and values autistic scholarship, as well as unearthing social power dynamics experienced by autistic people. ☐ Interpretative Phenomenological Analysis (IPA), a qualitative method which unearths the meaning of an experience from the participant perspective (Smith, Flowers, & Larkin, 2008) is applied to this study. IPA is well-suited to understanding experiences related to transitions and identity, two salient components of the research questions about autistic adolescent girls’ experiences with social skills programming at school. ☐ The findings revealed that the students placed much value on fostering authentic friendships with other students in their schools. The students in this study desired relationships where they felt respected and understood by peers and adults alike. Their perceptions of their teachers and classes led to understandings of the need for school personnel to develop positive relationships with autistic students. The young women in this study did not experience much intersection between being autistic and their gender as a female. The students were not exposed to autistic mentors or autistic peers who were also female either in their school or their community. Implications related to the well-being of autistic students going through transition, instruction on markers of autistic culture and neurodiversity, and the patriarchal constructs that can be reinforced in majority male gendered classroom spaces are expanded upon.