Parental Perceptions and Concerns Over Their Child's ASD-Related Behaviors: A Cultural Perspective

Background: Cultural influence on the perception of autism-related behaviors has drawn much attention, yet data are scant on this subject.  Because the determination of Autism Spectrum Disorders (ASDs) is solely based on observed behaviors, caregivers’ perception of these behaviors plays a crucial role on whether clinical evaluation or services are sought.  Taking advantage of a population-based autism epidemiologic study recently conducted in Taiwan, we addressed the issue of parental perception and concern from a cultural perspective. From a scientific perspective, the finding will provide information on the extent parental cultural background may influence prevalence of ASDs, and will help to address the need for public awareness in diverse populations.

Objectives:  To analyze and summarize parental perceptions and concerns over their child’s ASD-related behaviors in a Taiwanese population.

Methods: The Social Communication Questionnaire (SCQ) and Social Responsiveness Scale (SRS) were used as screening tools to ascertain possible cases of ASD.  The SCQ assesses the core behavioral domains of ASDs with a suggested cutoff score of 15 used in Western countries to differentiate children with and without ASDs.  The SRS is designed to assess autistic symptomatology as a quantitative trait. When used as a screening tool in the general population a raw score of >=70 in males and >=65 in females is recommended as a cut-point that provides evidence for the presence of an ASD.  Additionally, caregivers completed a survey of ten open-ended questions regarding concerns over their child’s behaviors, in general.  We compiled these answers in the group with either an SCQ or SRS score above the suggested clinical cutoffs in order to inspect caregivers’ views, perceptions, and concerns over their child at high risk of ASDs.

Results: Participants were 213 caregivers whose child’s SCQ score was >=15 (99 boys, 105 girls, 9 unknown sex). Of the 213, 202 completed the survey about their concerns.  Of the 202, 74 (36.6%) stated they do not have any concern, 93 (46.0%) had little concern, and 35 (17.3%) had some or more concerns.  Of those who stated they had concerns, most commonly mentioned was the child not being able to pay attention in class and poor academic performance, followed by communication issues, then bad temper.  Of the 368 who had met SRS cutoffs (172 boys, 185 girls, 11 unknown sex), 343 completed the survey about their concerns.  Of the 343, 51 (14.9%) said do not have any concern, 175 (51.0%) had little concern, and 117 (34.1%) had some or more concerns.  The top three concerns reported were: not paying attention in class and learning difficulties, communication problems, and social awkwardness.

Conclusions:  The majority of caregivers reported either no or only little concerns over behaviors of their child at high risk of ASD, according to the SCQ or SRS.  Possible interpretations of the finding include lack of autism awareness in the local community, family dynamics in child-caring, lower family SES, different views on child’s problem behaviors in this culture, and the fact that no autism intervention or education programs are available.