Perceived Outcomes and Expectations for Disclosure of an ASD Diagnosis in Community Recreation Contexts: An Instrumental Case Study

• Author / Creator

  Mazumder, Rinita

• Children with Autism Spectrum Disorder (ASD) identify community leisure and recreation activities as their highest priority when setting personal participation goals, yet they participate in significantly fewer community-based activities than their typically developing peers. Decreased community participation has been mostly attributed to the influence of family and child factors such as financial resources of the family, and/or the child’s emotional and social function. Contextual factors in community settings, including attitudes of community members and organizational practices and policies, have been infrequently evaluated. In a related study investigating parental decisions regarding disclosure and non-disclosure of an ASD diagnosis to others, parents report apprehension to disclose their child’s ASD diagnosis within community-based programs, often due to preconceived ideas about Autism and stigma. This study is the first to investigate the expectations and perceived outcomes of disclosure of an ASD diagnosis from the perspective of community recreation programs. An instrumental case study approach was used for this study. Consistent with case study methodology, multiple data sources were used. Semi-structured interviews were conducted with six staff who worked for a large organization that provides a number of community recreation programs. These staff represented a range of seniority from senior leadership to new summer program staff. Interviews were audio-recorded, transcribed verbatim, and checked for accuracy. Registration documents for programs at the same organization were also reviewed. Thematic analysis of these data was conducted, providing the opportunity to identify, analyze, and report patterns found within the interview transcripts. Analysis revealed three themes associated with disclosure in community settings: (1)Perceived Informational Needs (2) Perceived Disclosure Outcomes, and (3) The Expected Disclosure Process. Our study helps address this critical research gap to inform more effective practices and support services for families and address programming and societal level education and intervention to improve social participation for children with ASD. These outcomes may ultimately contribute to improved quality of life for these children and their families, and healthy communities overall.

• Subjects / Keywords

  • Community Recreation
  • Disclosure
  • Diagnostic Disclosure
  • Autism Spectrum Disorder
  • ASD

• Graduation date

  Spring 2019

• Type of Item

  Thesis

• Degree

  Master of Science

• DOI

  https://doi.org/10.7939/r3-sqym-wn22

• License

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