The impact of caregiver stigma on real-life social experience of Taiwanese adolescents with autism spectrum disorder

• Published in: Autism : the international journal of research and practice Vol. 25; no. 7; pp. 1859 - 1871
• Main Authors: Lim, Valerie Hwee Taur, Chen, Yu-Wei Ryan, Tseng, Mei-Hui, Bundy, Anita, Cordier, Reinie
• Format: Journal Article
• Language: English
• Published: London, England SAGE Publications 01.10.2021; SAGE PUBLICATIONS, INC
• Subjects: Adolescents; Anxiety; Attitudes toward Disabilities; Autism; Autistic adolescents; Caregiver Attitudes; Caregivers; Cultural Context; Elementary School Students; Family Relationship; Foreign Countries; Handheld Devices; High School Students; Intellectual disabilities; Intellectually disabled people; Interaction; Mothers; Peer Relationship; Pervasive Developmental Disorders; Preadolescents; Rejection (Psychology); Relatives; Severity (of Disability); Social experiences; Social interaction; Social participation; Stigma; Student School Relationship; Support services; Teenagers; Telecommunications; Taiwan; real-life experience; cultural influence; autism; ecological momentary assessment; experience sampling method
• ISSN: 1362-3613; 1461-7005
• DOI: 10.1177/13623613211004329

Caregivers of adolescents with autism spectrum disorder commonly experience stigma. However, how stigma influences social interactions of adolescents with autism spectrum disorder is unclear. We aimed to explore the impact of caregiver stigma on real-life social experiences of Taiwanese adolescents with autism spectrum disorder. In the context of everyday activities, 76 adolescents with autism spectrum disorder who were not intellectually disabled (69 males, aged 10–16 years) carried a mobile device that prompted them 7 times, randomly, each day for 7 days to record with whom they were interacting, what they perceived, and how they felt about the interactions. Caregivers completed the Affiliate Stigma Scale to measure caregiver stigma. Multilevel analyses revealed that participants whose caregivers perceived high levels of stigma were more likely than those whose caregivers experienced less stigma to interact with family members and less likely to be interested in interacting with people at school. However, those participants also experienced more anxiety while interacting with family members. The findings shed light on ways that caregiver stigma impacted the social experiences of adolescents with autism spectrum disorder and suggest that, in promoting social participation for adolescents with autism spectrum disorder, researchers and service providers must support caregivers to manage stigma. Lay abstract Caregivers of people with autism spectrum disorder commonly experience stigma. As a result, they may avoid contact with others, in turn, influencing their child’s social participation. This study aimed to explore the impact of stigma perceived by the caregivers on the everyday social experience of Taiwanese adolescents with autism spectrum disorder. We asked 76 adolescents with autism spectrum disorder who did not have intellectual disability (69 males, aged 10–16 years) to carry a mobile device for 7 days. The device prompted them 7 times each day to record who they were interacting with, what they perceived, and how they felt about their social interactions. In addition, we asked their caregivers to complete the Affiliate Stigma Scale to measure their experience of stigma. We found that participants whose caregivers perceived high levels of stigma were more likely to spend time with family members and less likely to be interested in interacting with people at school. Those participants also were more likely to experience anxiety while interacting with family. Our study suggests that it is important for clinicians to implement support services for adolescents with autism spectrum disorder and help caregivers in managing stigma to promote their child’s social participation.