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

Aminat Y Oduyemi,Alero A Roberts,Ifeoma P Okafor,Ugochukwu T Eze,Babatunde A Akodu

doi:10.1186/s40359-021-00687-3

Aminat Y Oduyemi, Alero A Roberts + Show 3 more

Open Access

https://doi.org/10.1186/s40359-021-00687-3

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Abstract

BackgroundAutism 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).AimThis 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.MethodsThis 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.ResultsThe 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.ConclusionOverall, 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.

Highlights

The autism spectrum describes a group of developmental disorders usually most diagnosed in early childhood
Parents should be properly educated about Autism Spectrum disorder (ASD)
This study revealed very poor knowledge of ASD among parents

Summary

Introduction

The autism spectrum describes a group of developmental disorders usually most diagnosed in early childhood. After diagnosis, are construed as being “on the spectrum” have impaired development which manifest before 3 years of age, and abnormal functioning in reciprocal social interaction, communication and Oduyemi et al BMC Psychology (2021) 9:182 restricted, stereotyped, repetitive behaviour [1] They have language difficulties, lack of initiation of activity and may display antisocial behaviours such as withdrawal, aggression, or disruption, sometimes as a reaction to stress or changes in normal routine [1, 2]. These behaviours constitute a complex formation of stressors which induces tremendous stress on the families, especially the parents resulting in humiliation, social exclusion and isolation [3,4,5,6], thereby impacting the mental health of parents and primary carers [7]. Parents are usually blamed and judgment from others is often internalized (felt stigma)

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