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“Our disability is communication and everything about getting help is communication”: A grounded theory analysis of disclosure and negotiation for autism-related accommodations at work
Underhill, Margaretta
Underhill, Margaretta
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Abstract
Autism spectrum disorder (ASD) is a neurodevelopmental disability that occurs in nearly 1 in 55 children in the United States (US) (Baio, 2018; Centers for Disease Control and Prevention, 2018). Autism is characterized by differences in social interaction, communication, and restricted/repetitive behaviors/interests (American Psychiatric Association, 2013b). Each year in the US, an estimated 50,000 adolescents on the autism spectrum turn 18 years of age (Shattuck et al., 2012) entering legal adulthood and post-secondary opportunities. Despite growing numbers of autism diagnoses, the experiences of adults on the spectrum remain understudied, particularly post-secondary experiences in the workforce (Hendricks, 2010; Shattuck et al., 2012). Unemployment rates for those on the spectrum are significantly higher than the general population, ranging from about 38% (Ohl et al., 2017) to 50% (Roux et al., 2013) at any given time. Additionally, employees on the spectrum are often underemployed, meaning they are working in positions that may not take full advantage of their range of skills, background, or education (Hendricks, 2010; Shattuck et al., 2012). Many explanations could be made for these low employment rates, but one possible reason could be stigma related to disability and neurodiversity in the workforce coupled with a lack of organizational support. If proper work accommodations were provided, employability and retention rates of employees on the spectrum could increase. This dissertation used grounded theory, employing semi-structured interviews, to explore the lived experiences of employees on the spectrum. The purpose of this research was to explore the ways in which adults on the spectrum in competitive employment (1) communicate their diagnosis to their employer, (2) request and/or negotiate for accommodations needed to be professionally successful, and explore (3) how employees experience organizational responses after communicating their diagnoses and/or negotiating for accommodations. Several themes emerged addressing each of these research questions. Four themes emerged for RQ1, the first of which is Preparing for Disclosure: Information-Seeking Communication. This theme revealed that employees prepare for disclosure of their diagnosis by seeking information in a variety of different ways. Their information-seeking behavior directly impacts the second theme: Assessing Risks to Disclosure. Participants were deeply aware of various risks to disclosure, such as losing a job and stigmatization. The third theme, Managing Information, addresses how participants invested significant time and energy managing their private health information and engaged in gradations of honesty when communicating about autism. The fourth theme to help answer RQ1 consisted of identifying Types of Disclosure. This study found that some participants engaged in (a) Organizationally Imperative Disclosures, (b) Courtesy Disclosures, and (c) Tipping Point Disclosures. Each type of disclosure is defined and described. Multiple themes emerged to help answer the second research question. First, participants experienced various organizational processes for disclosing a diagnosis and requesting accommodations, including: (a) Structured Processes, (b) Semi-Structured Processes, and (c) Self-Structured Processes. Each structure varied in terms of its level of formality and embeddedness in employing organizations. The second theme, Accommodation Types, categorizes the types of accommodations requested by participants ranging from communication, sensory, environmental, and procedural accommodations among others that are addressed. The structure of the accommodation process (structured, semi-structured, or self-structured) and the specific accommodations requested seemed to have little bearing on whether accommodations were ultimately granted. Lastly, regarding the third research question, employees experienced a range of responses to their disclosures and requests for accommodations. These responses manifested in: (a) Positive Responses, (b) Neutral Responses, (c) Negative Responses and (d) Irrational Responses. Findings also concerned whether and how accommodations were granted, including: including: (a) Granted Accommodations Deployed Correctly, (b) Granted Accommodations Deployed incorrectly, (c) Denied Accommodations (d), Ignored Accommodation Requests and (f) Weaponized Accommodations.
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Date
2022-08-31
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University of Kansas
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Keywords
Communication, Organizational behavior, Disability studies, autism, Communication Privacy Management, disclosure, grounded theory, organizational communication, workplace accommodations