Internalization of stigma among parents of children with autism spectrum disorder in Nigeria: a mixed method study

Abstract

Background Autism Spectrum disorder (ASD) has uniquely stigmatizing aspects because children with ASD have no physical markers of their condition. Parents are usually blamed and judgment from others is often internalized (felt stigma). Aim This study was conducted to determine knowledge about ASD, negative experiences (enacted stigma), internalization of stigma (felt or self stigma) and its correlates among parents of children with ASD in Lagos, Nigeria. Methods This was a cross-sectional study of 230 parents in Lagos, Nigeria employing mixed-method data collection methods. Quantitative data were collected using a structured interviewer-administered questionnaire and analyzed with Epi- Info™ version 7.0 statistical package. Data were summarized with proportions, mean and standard deviation. Chi square and Spearman’s correlation tests were done, and the level of significance was pre-determined at 5% (p < 0.05). In-depth interviews were also conducted among six parents to further explore the topic. The interviews were analyzed narratively. Results The proportion of mothers and fathers were 175 (76.1%) and 55 (23.9%) respectively. The mean age of respondents was 42 ± 8.5 years. Overall knowledge of ASD was very poor as only 3(1.3%) had good knowledge. Overall, 122(53%) usually had negative experience of parenting a child with ASD (enacted stigma), mothers (17.1%) more than fathers (9.1%). Majority 192(83.5%) internalized stigma. There was a low–moderate correlation between ‘enacted’ stigma and ‘internalized’ stigma (ρ- 0.400, p < 0.001). From in-depth interviews, many parents revealed that their child’s condition had negative effects on the family. Many also recounted negative experience of stigma. Conclusion Overall, parents of children with ASD had poor knowledge of the condition. Majority internalized stigma and this increases with negative treatment from others. Parents should be properly educated about ASD. Community-based education to increase awareness about ASD in addition to encouraging people to show empathy and reduce stigmatizing behaviour towards parents of children with ASD are recommended.

Parents' perceptions of autism and their challenges in China

“…At the same time, the general public does not know enough about autism, and the acceptance level is low. Parents of autistic children are ashamed to talk about their children in front of others, and they often feel embarrassed and ashamed because they are misunderstood and criticized (David et al, 2000;Torbet et al, 2019;Oduyemi et al, 2021). The associated stigma adds to the psychological stress of parents of children with autism.…”

A qualitative study on the experience of stigma for Chinese parents of children with autism spectrum disorder

“…The processes of stigma involve “labelling, stereotyping, exclusion, loss of status, and discrimination” 8 (p.811). Since individuals with ASD often show an absence of physical markers as a sign of disability but exhibit some behavioral and antisocial behaviors such as tantrums, biting themselves, mouthing objects, and aggression 9 , 10 , both their parents are blamed for poor parenting which results in displaying inappropriate behavior 11 . Therefore, parents often experience “courtesy stigma” 7 , 12 which is “a product of their larger biographical relationship with their child and their known about identity as the parent of a child with disability” 4 (p.737).…”

“…They may internalize public’s negative stereotypes or attitudes as affiliate stigma 9 , 16 or internalized stigma 17 . With the increased exposure to negative experiences and feelings of shame or the fear of rejection 9 , the level of psychological distress of associates of stigmatized people increases 16 , 18 .…”

Influence of child’s autism on relationships

“…With deficits in social communication and interaction, it restricts one's ability to establish and maintain social relationships. As an invisible disability defined by the lack of physical markers (Oduyemi et al, 2021), autism can result in stigmatising reactions from the society. The number of people affected with autism are increasing globally (Bougeard et al, 2021), supporting the claim of an autism epidemic (Chiarotti & Venerosi, 2020) and evidence corroborates that it could be more likely due to the increased reporting and application of diagnosis (Russell et al, 2021), and the growing awareness and societal recognition among people towards autism (Underwood et al, 2021).…”