Perceived Causes of Autism Spectrum Disorders among Taiwanese Parents of Affected Children: A Qualitative Study

Abstract

Background: Autism Spectrum Disorders (ASDs) represent a complex group of neurodevelopment and mental disorders. Currently, the etiologies for ASDs are unclear. Consequently, it is important to assess the perceptions of ASDs among parents of affected children, as their perceptions can impact parent-child bonding, disease prognosis and treatment, subsequent education and living environment of the affected child, and interactions with health professionals. The majority of available research regarding parental perceptions of ASDs has been conducted in the Western countries. Given that culture plays an important role in parents' views regarding the causes of ASDs, this study aims to examine perceptions of the etiology of ASDs among parents in Taiwan -an Asian country strongly influenced by the Chinese culture.Methods: Participants were recruitment through ASDs organizations in Taiwan. In-depth interviews were performed with 31 mothers and 8 fathers who had at least one child diagnosed with ASDs. All interviews were audio-recorded, transcribed, and subsequently analyzed via content analysis.Results: The themes of ASDs etiologies identified by participants from the highest to the lowest frequencies were: genetics (n=30; 76.9%), problems during mother's pregnancy (n=18; 46.2%), complications/situations during delivery (n=13; 33.3%), vaccination (n=11; 28.2%), environmental pollutions (n=10; 25.6%), children's non-ASDs related health problems and unintended injuries (n=9; 23.1%), parenting style (n=7; 17.9%), parents' occupation (n=7; 17.9%), spiritual or religious factors (n=6; 15.4%), children's diet (n=2; 5.1%), maternal age at the time of pregnancy (n=1; 2.6%), and children's use of traditional Chinese medicine (n=1; 2.6%).Discussion: Taiwanese parents held diverse views on the causes of ASDs. Overall, parental beliefs were based on culture, scientific evidence/research and uninformed non-scientific views. Our results may help health professionals and researchers identify gaps in parents' knowledge of ASDs and understand commonly held misperceptions about the causes of ASDs. Further, findings generated from this qualitative research may serve as the foundation for a research instrument to survey beliefs regarding the causes of ASDs among larger samples of Taiwanese parents who have children affected by ASDs.

Vaccines and autism: a preliminary qualitative study on the beliefs of concerned mothers in Italy

“…Again, these are factors external to the mother's body, such as some food the mother may have eaten or chemical elements the mother might have been exposed to during pregnancy. This is in line with previous studies about parents' beliefs pointing to environmental factors such as environmental pollution or diet, as causes of autism (Chen et al, 2014;Zuckerman, Lindly & Sinche, 2016). Feelings of guilt were not openly expressed by the mothers during the interviews.…”

“…For instance, some mothers felt that the vaccine might be too strong for children who are already debilitated by a difficult delivery or by non-ASD related health problems. The vaccine contributed to exacerbating a condition of weakness in their child (Chen et al, 2014).…”

Information needs in genetic testing: A needs assessment survey among Taiwanese parents of children with autism spectrum disorders

“…All the research protocols for this study were approved by the Institution Review Board at Texas A&M University. The paper-and-pencil survey was first developed based on past literature (Bunn et al, 2002; Doukas et al, 2004; Gooding et al, 2006; Levine et al, 2010; Mercer et al, 2006; Nordin et al, 2004; Selkirk et al, 2009) and our previous qualitative data (Chen et al, 2013, 2014, 2015a, 2015b; Li et al, 2016). Once drafted, the survey was reviewed by a panel of experts for content validity.…”

Autism Spectrum Disorders: Prenatal Genetic Testing and Abortion Decision-Making among Taiwanese Mothers of Affected Children

“…Based on past research [19,[29][30][31]35,[37][38][39][40][41][42][43][44], we developed a survey in Mandarin to examine factors associated with the mothers' intention to undergo PGT for detecting ASD susceptibility genes within their fetuses ("If you are pregnant, how likely are you to undergo PGT for detecting ASD susceptibility genes?") and their abortion decision-making in a hypothetical scenario ("If testing results indicate that you might have a fetus with ASD, what would be your choice?").…”

“…Detailed descriptive statistics for the sample characteristics are shown in Table 1. [35,36]. The minimum and maximum severity scores were 1 (i.e., mild) and 4 (i.e., profound), respectively.…”