How Taiwanese parents of children with autism spectrum disorder experience the process of obtaining a diagnosis: A descriptive phenomenological analysis

Abstract

An autism spectrum disorder can result in considerable stress and confusion for parents as they attempt to understand their child's problems and obtain a diagnosis. Few studies have explored the parental experience in the context of Chinese culture. The purpose of this study was to understand the experiences of parents in Taiwan of children diagnosed with autism spectrum disorder. In total, 15 parents, 1 father and 14 mothers, were recruited by purposive sampling. This qualitative study used semi-structured interviews and descriptive phenomenological analysis. The findings indicated that parents of children diagnosed with autism spectrum disorder underwent five coping experiences during the diagnostic process: (1) uncertainty and difficulty understanding their child's behaviour, which occurred during the pre-diagnosis phase; (2) obligation to obtain professional services; (3) anxious searching for a second opinion, which occurred during the diagnosis phase; (4) acceptance and fortitude and (5) further adjustment during the post-diagnosis phase. Our findings add to our understanding of how parents experience the diagnostic process, which could improve medical professionals' counselling and support for parents at the stage of obtaining a diagnosis for their children.

The parenting experiences and needs of Asian primary caregivers of children with autism: A meta-synthesis

“…Twenty-eight Asia-based and Western-based papers described parents’ initial perceptions of ASD and their emotions upon noticing their children’s abnormal behaviors. The majority of the parents noticed their children “being different,” and they often felt anxious, uncertain, and confused and found it hard to understand their children’s behaviors (Chao, Chang, Chin, Li, & Chen, 2018; Desai, Divan, Wertz, & Patel, 2012; Minhas et al, 2015; Shu, Hsieh, Hsieh, & Li, 2001). One mother recounted:You know, this kid was very stubborn.…”

“…With most parents claiming limited awareness or knowledge about autism, some did not suspect their children to be autistic and attributed their situations to something that “he will grow out of” (Chao et al, 2018), introversion, mental disability, or other physical disorders (e.g. deafness; Al Kandari, 2008).…”

“…deafness; Al Kandari, 2008). A lack of awareness, fear, and stigma of a diagnosis also often delayed parents seeking help (An, Chan, & Kaukenova, 2018; Chao et al, 2018; Daghustani, 2017). Although parents in most studies attributed the cause of ASD to vaccinations, genetics, and environmental factors, many held superstitious beliefs such as the “evil eye,” “black magic,” and “Jinn possession,” which subsequently influenced the type of treatment sought.…”

“…If not, it does not make any difference. Really, we are just treating a dead horse as if it were still alive” (Chao et al, 2018, p. 394).…”

Parent Experiences of Autism Spectrum Disorder Diagnosis: a Scoping Review

“…Overall, the journey to ASD diagnosis is perceived by parents as fraught with delays. The most common way studies measured this delay was with parentreported time lapse from age of first concern to age of diagnosis with averages ranging from 12 months to 55 months (Bejarano-Martín et al 2019;Chao et al 2018;Crane et al 2016;Hofer et al 2019;Martinez et al 2018;Moh and Magiati 2012;Ribeiro et al 2017;Schelly et al 2019).…”