Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations.
This small-scale, descriptive qualitative study examines the perspectives of parents who have transition-aged adolescents with autism spectrum disorder on the topics of disability studies, advocacy, and adulthood expectations for their adolescents. In addition, the study attempts to determine the acceptability of disability studies content in potential parent programming related to transition for this population.
Primary Author and Speaker: Janvi Patel
Contributing Authors: Lindsay Sauve
BACKGROUND: Current research highlights that adolescents with Autism Spectrum Disorders (ASD) are less likely to pursue and complete post-secondary education, obtain and maintain employment, maintain social supports or friendships, and live independently compared to their peers without disabilities or with other disabilities (Newman et al., 2011). These traditional markers of post-transition success embody medicalized conceptualizations of disability by implying that adolescents with ASD lack the inherent skills to engage in post-secondary education, competitive employment, maintain friendships, live independently, etc. (Smith & Routel, 2010). This perpetuates disabling roles in adolescents with ASD and restricts the ways in which they can successfully participate as adult members in their communities by failing to consider the impact of social and attitudinal barriers on adulthood outcomes. Re-Imagine Transition and Adult Success is a proposed critical reflection program for parents of transition-aged youth with ASD that seeks to educate parents about social and attitudinal barriers on adulthood outcomes from a disability studies framework for transition planning (Patel, 2019). However, limited research is available on parents' perspectives of a proposed program, and insights will help guide development of the program.
PURPOSE: To gather and synthesize opinions of parents who have transition-aged youth with ASD regarding - Their experiences related to their children's transitions - Their familiarity, acceptability, and perceived benefits of disability studies programming
METHODS: a) PARTICIPANTS: Parent Characteristics: (n = 7 mothers, 1 father), predominately Caucasian (n = 7). Transition-aged Youth Characteristics: (n = 4 males, 1 female, 2 gender non-binary), 2 of mixed ethnicities, age ranged from 14 to 19 years (M = 16.7) b) Design and Procedures: Descriptive study in which two listening sessions of two hours each were conducted (group 1 = 3 parents, group 2 = 5 parents). Primary author served as the discussion facilitator. Parents responded to open-ended questions regarding transition and disability studies programming. Both sessions were recorded, transcribed, and analyzed using thematic coding techniques.
RESULTS: Transcribed sessions were reviewed and coded using thematic analysis techniques to determine common themes between both listening sessions. Themes were cross referenced by contributing author for content validity. Parents experience advocacy efforts as an ongoing process, a perceived ‘uphill' battle, a quest for access to appropriate resources for child. Their worries for their children as they enter adulthood include child maintaining interpersonal relationships, child's employment status, fate of their child if the parent dies, mental health supports as an adult with ASD. Parents are excited to see the cultivation of their child's interests in adulthood. Feedback about disability studies content in transition planning was mixed. Most parents stated that the proposed content about disability studies was not as relevant during transition but likely more helpful during initial diagnosis. Parents expressed interest and need for transition programming, especially related to education on transition resources.
CONCLUSION: Parents of transition-aged youth with ASD show interest for programming that helps with transition planning. The selected disability studies content may not be as relevant for parents of transition-aged youth, and further research is warranted to determine its relevancy. This proposal introduces a potential avenue for occupational therapy providers to infuse disability studies into practice in order to promote greater occupational justice for those with ASD.
References
Newman L, Wagner M, Knokey A, Marder C, Nagle K, Shaver D, et al. (2011) The post-high school outcomes of young adults with disabilities up to 8 years after high school. A report from the National Longitudinal Transition Study-2 (NLTS2) (NCSER 2011-3005). Menlo Park, CA: SRI International.
Patel, J. S. (2019). Re-imagine transition and adult success: a critical reflection program for parents of transition-aged youth with autism spectrum disorder involving disability studies (13883498.) [Doctoral dissertation, Boston University]. ProQuest Dissertations Publishing.
Smith, P., & Routel, C. (2009). Transition Failure: The Cultural Bias of Self-Determination and the Journey to Adulthood for People with Disabilities. Disability Studies Quarterly, 30(1). https://doi.org/10.18061/dsq.v30i1.1012
