https://doi.org/10.1177/1362361318778903
Autism
1–8
© The Author(s) 2018
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DOI: 10.1177/1362361318778903
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Introduction
Autism spectrum disorders (ASD) are characterized by
challenges in social interactions and communication, as
well as restricted, repetitive, and stereotyped behavior in
affected individuals (American Psychiatric Association,
2013). In Taiwan, ASD is currently the third most common
developmental disability (Lai et al., 2013), and its preva-
lence is higher than that of the global average (Chen et al.,
2015a). Moreover, the prevalence of ASD in Taiwan has
been increasing yearly (Chien et al., 2011; Hsu et al.,
2012), largely due to a broader concept of ASD, changes in
diagnostic criteria, better ASD-related professional ser-
vices, and increased public awareness of ASD (Hsu et al.,
2012; Lai et al., 2013).
In Taiwan, genetic testing for ASD (mainly chromosomal
microarray analysis), a genetic test to identity some ASD-
associated genes, is currently provided in the prenatal
stage (Department of Obstetrics and Gynecology National
Cheng Kung University, n.d.; Dianthus MFM Center,
n.d.-a; Ko’s Obstetrics & Gynecology, n.d.-a; neoGene
Obstetric and Pediatrics Clinic, n.d.). Specifically, the
amniotic fluid samples are tested for copy number variants
Information needs in genetic testing:
A needs assessment survey among
Taiwanese parents of children with
autism spectrum disorders
Lei-Shih Chen
1
, Jungkyung Min
1
, Shixi Zhao
1
, Yu-Chen Yeh
2
and Tse-Yang Huang
3
Abstract
We conducted the first needs assessment study by examining the information needs in genetic testing for autism spectrum
disorders among parents of children with autism spectrum disorders in Taiwan. Parents of children with autism spectrum
disorders in 236 public elementary schools with special education services were invited to complete a survey. About
two-thirds of participants (65.7%) had never heard about genetic testing for autism spectrum disorders. Yet, the majority
(71.4%) expressed an interest in learning about this testing. The top three topics participants identified to assist them
in making informed decisions before undergoing genetic testing (for themselves, their affected children, or other family
members) were testing accuracy (79.7%), genetic causes of autism spectrum disorders (79.4%), and the link between
testing and treatment (79.4%). A health education brochure (47.2%) was the most desired educational approach. Our
results can be utilized to develop information and counseling materials for genetic testing for autism spectrum disorders
in Taiwan as well as to address the needs of parents of children with autism spectrum disorders, particularly in informed
decisions-making. Moreover, to promote better communication between the providers and parents, when discussing
genetic testing for autism spectrum disorders with Taiwanese parents of children with autism spectrum disorders,
healthcare professionals’ priorities should be in line with the preferred topics identified in this study.
Keywords
Autism spectrum disorders, education, genetic testing, needs assessment
1
Department of Health & Kinesiology, Texas A&M University, College
Station, TX, USA
2
Department of Educational Psychology, Texas A&M University,
College Station, TX, USA
3
Department of Special Education, National Tsing Hua University,
Hsinchu, Taiwan
Corresponding author:
Lei-Shih Chen, Department of Health & Kinesiology, Texas A&M
University, 4243 TAMU, College Station, TX 77843, USA.
Email: lacechen@tamu.edu
778903AUT 0 0 10.1177/1362361318778903Autism X(X)Chen et al.
research-article 2018
Original Article