Abstract
A family’s journey in understanding their child’s behaviors in relation to Autism Spectrum Disorders (ASD) frequently begins with screening. This study aimed to characterize the interpretive processes that unfold for parents. We employed longitudinal interviews with 19 families engaged in a community-based multi-stage screening protocol. Parents participated in 1–6 interviews dependent upon children’s length of engagement in the screening protocol; data were analyzed through modified grounded theory. Parents who moved towards understanding their child’s behaviors as ASD expressed (1) sensitization to ASD symptoms, (2) differentiation from other developmental conditions, and (3) use of the ASD diagnosis to explain the etiology of concerning behaviors. Identifying interpretive processes involved during ASD screening provides new opportunities for shared decision-making.
Highlights
IntroductionPrior research emphasizes the requirement for shared decision-making to rely on good clinical communication skills, especially in cases where patients and their families demonstrate low health literacy (Braddock et al 1997; Elwyn et al 2012)
The Institute of Medicine/National Academy of Medicine (IOM/NAM) has emphasized the imperative of focusing on patients’ perspectives to reduce diagnostic errors, which are characterized by a failure to “establish an accurate and timely explanation of the patient’s health problems,” and failure to “communicate that explanation to the patient” (National Academies of Sciences 2015, p. 35)
Our study finds that parents engaged in three dynamic and bi-directional processes that were influential as parents moved through the screening protocol, (1) sensitization over time to Autism Spectrum Disorder (ASD) symptomatic behaviors, (2) differentiation over time from other developmental conditions, and (3) explication of the underlying cause of the concerning behavior
Summary
Prior research emphasizes the requirement for shared decision-making to rely on good clinical communication skills, especially in cases where patients and their families demonstrate low health literacy (Braddock et al 1997; Elwyn et al 2012) Screening tools and their administration may support communication with parents, including those with low health literacy, by providing an opportunity to carefully review the symptomatic presentation, diagnostic criteria, and prognosis associated with ASD. Literature on the experiences of parents largely focuses on a “loss” or “stress-reaction” paradigm, both of which tend towards investigation of how the ASD diagnoses impacts and presents new pressures to the family that require adaptation (Avdi et al 2000) In this tradition, prior studies indicate multiple pressures drawing families away from pursuing a diagnosis, including the stigma of a diagnosis, immutability of a “life-long diagnosis,” and the desire to defend the status of their child as “typically developing” or holding a language delay that will resolve (Ryan and Salisbury 2012; Midence and O’Neill 1999). While this line of research highlights the salience of multiple pressures acting upon families, it provides less insights into how the extended periods of time required for ASD screening and diagnostic evaluation influence the ways within which families make sense of potential differences from a “typically developing child.”
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