Abstract
Background: The diagnosis of autism spectrum disorder (ASD) cases is increasing in Taiwan. Genetic testing for children with ASD offers several potential benefits and is available with out-of-pocket expenses. Parents play a pivotal role in having their children with ASD tested; therefore, understanding their perceptions of, and perceived barriers to genetic testing is vital. Methods: Semi-structured interviews were conducted with 39 parents of children with ASD in Taiwan. Interviews were recorded and transcribed verbatim. NVivo 12 software (QSR International, Doncaster, Australia) was used to facilitate an inductive coding methodology. Results: The majority of participants (74.4%) supported ASD genetic testing for their children with ASD, citing reasons such as clarifying ASD etiology, well-informed family planning, contributing to ASD research, and early ASD detection and intervention. Others indicated that they were either against such testing (17.9%), or unsure (7.7%) about whether to take their children with ASD for genetic testing. Those who were opposed reported that their main concerns related to perceptions of no value of genetic testing, potential for family conflict, and financial difficulties. Conclusions: Most of the parents of children with ASD that we interviewed expressed favorable views of ASD genetic testing. There exists a need to increase parental access to education and counseling, and to include testing coverage in Taiwanese national health insurance.
Highlights
Autism spectrum disorder (ASD), characterized by symptoms that generally present before the age of 2, is a developmental disorder characterized by communication, behavioral and social interaction challenges, restricted interests and repetitious behaviors, and difficulty functioning in traditional work or school environments [1,2]
Note: the sum of the themes is greater than 100% as some participants reported more than one reason to support autism spectrum disorder (ASD) genetic testing
Note: the sum of the themes is greater than 100% as some participants reported more than one reason to oppose ASD genetic testing
Summary
Autism spectrum disorder (ASD), characterized by symptoms that generally present before the age of 2, is a developmental disorder characterized by communication, behavioral and social interaction challenges, restricted interests and repetitious behaviors, and difficulty functioning in traditional work or school environments [1,2]. In Taiwan, which has a population of approximately 23.4 million [3], the prevalence of ASD has nearly tripled in the past 14 years, increasing from 5359 in 2005 to 15,439 cases in 2019 [4]. This increase in ASD diagnoses has been linked to many factors, including better ASD awareness, changes in ASD diagnostic criteria, and improved access to ASD-specific services [5,6,7]. Parents play a pivotal role in having their children with ASD tested; understanding their perceptions of, and perceived barriers to genetic testing is vital.
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