ASD stigma not only affects the children but also their parents. Parents internalize stigma as a result of experiencing stigma through association with their children with ASD. This study revealed very poor knowledge of ASD among parents. Self-stigma increases significantly with negative experiences from others.
The mean age of the respondents was similar to that of respondents in Ethiopia and Hongkong where the mean ages were 45.9 and 42.5 years [19, 25]. Majority of the respondents in this study were mothers, married, employed and had post-secondary level of education. Other studies also comprised mostly mothers [16, 19, 26, 36, 37].
Sources of information on ASD were mainly from health care workers and media (TV/Radio/Newspaper/Social media). The study was facility-based and thus respondents would have relied on health workers for information on ASD as people generally know very little about the condition. Other sources of information on ASD include family and friends and rarely the internet. This is similar to another group of respondents in Addis Ababa, Ethiopia where main sources of information were health extension workers (52.9%) [20]. Informal sources of information on the condition are also common in Africa [38], but in USA, main sources of information include internet (73%), books, magazines or video tapes (71%) and other parents of children with ASD (42%) [35]. Though our respondents were educated, this variation may be due to cultural and spatial differences as internet facilities are better in the developed countries.
Only very few of our respondents had good knowledge about ASD, a reflection of the lack of proper education on the condition by the health workers since the study was facility-based. The role of informal sources of information and cultural beliefs should be considered. The poor knowledge recorded supports reports from other authors in LMIC [15, 16, 36]. This finding is not surprising as health workers have also shown low awareness/knowledge [39]. Conversely, studies among teachers in USA and Pakistan showed better knowledge [40, 41], and in Zambia, mothers of children with epilepsy were considered to have high knowledge about the condition [42].
Regarding the symptoms of ASD and interventions such as behavioural and speech therapy respondents had good knowledge because they have first-hand experience of these symptoms in their children and they were recruited from facilities where such interventions were likely available. Also in the Zambian study on epilepsy, mothers lacked knowledge in the domain of ‘cause’ of the condition [42]. Cultural beliefs can also shape the understanding of ASD even among immigrants in highly developed countries [43]. So far, socio-demographic factors influencing knowledge have largely not been reported specifically among parents and caregivers of children with ASD. The population-based study on caregivers of young children (not specific for ASD) in Nepal, found that knowledge was significantly better among the older and more educated respondents and those from the upper caste/ethnic group [15].
Overall, more than half of the respondents reported negative experiences (enacted stigma) in parenting a child with ASD. This is higher than rates reported in North Carolina, USA where the study compared both Japanese and American mothers’ experience of stigma. Only 28.1% and 22.2% of both Japanese and American mothers had experienced social stigma and rejection respectively [44]. Cultural variations likely account for this differential. Most parents in Africa report experiences of enacted stigma according to studies which were largely qualitative with fewer respondents [18,19,20, 26]. Stigma is not influenced by the parents’ or child’s personal characteristics (except for religion) but increased by other attributes such as having sought traditional help and provided supernatural explanation for their child’s condition [20].
In the in-depth interviews, many parents recounted their negative experiences. These themes resonate across other similar studies across countries [16, 18, 24,25,26,27, 35]. Our respondents equally lamented the negative effects of ASD on their family life which also corresponds with reports from the afore-mentioned studies. Amidst all the difficulties, stress, and negative experiences from parenting children with ASD, parents still maintain a positive outlook to life [45].
In our study, mothers had more negative experience of parenting a child with ASD compared to the fathers though the difference was not statistically significant. Also in Iran, mothers (58.6%) had more negative experience than the fathers (35.6%) [46]. This is likely related to the fact that mothers are usually the primary caregivers of the child and are responsible for the child. But there might be other explanations for this because some children are afraid of their fathers and so they respond to their commands to behave [15]. Only mothers participated in the in-depth interviews. Perhaps the fathers who declined might have given us a different narrative.
Findings from our study reveal that majority internalized stigma, higher than the rates reported by other authors. For example, among Chinese, results indicated that about half (50.9%) internalized stigma [28] and also about half in Virginia [35]. In Israel, it was reported to be low [9] but in Hong Kong, internalized stigma was severe among respondents [25]. Self-stigmatization of respondents was said to be prevalent because respondents showed low self-esteem, high shame proneness and poor family adaptability [6, 25]. This is because parents, who have utilized coping strategies such as meditation, research on autism, and prayer experienced less negative emotions. Many parents in our study experienced enacted stigma and so it is not surprising that they feel ashamed and internalize this stigma. One of the in-depth interviewees confessed that she blames herself for giving birth to her autistic child. This is an expression of a very strong negative emotion.
Parents who were less educated and families with lower monthly income experienced more negative experiences with a significant difference. As it were, their low socio-economic conditions already expose them to stigma and negative experiences generally. Respondents at the lower and upper family income groups experienced more ‘self stigma’ with no significant difference. Again, there are few quantitative studies reporting on the personal variables influencing self-stigma and most of the variables such as caregivers’ gender, age, educational level, children’s ages were insignificant [27, 28].
Further analysis showed a low-moderate positive correlation between negative experiences with parenting a child with ASD and internalization of stigma. This means that other people make them feel bad about themselves due to their children’s condition. The Virginia study showed statistically significant difference between respondents’ experience of parenting a child with ASD and assessment of self-stigma [35]. Other factors which enhance internalized stigma among parents of children with developmental disorders include poor family/social support, non-acceptance of the condition, low awareness/knowledge of the condition and psychological distress [19, 47]. Proposed interventions need to address the issue of stigmatization in the larger society and reduce internalization of stigma among parents. During the in-depth interviews, some parents confessed that they had ‘accepted their fate’, or that they had ‘left everything to God’. Their responses are influenced by cultural and religious inclinations which supports them not to give up in such situations. Parents usually adopt various coping strategies such as religion/spirituality, respite care, talking to relatives and friends, acceptance, and self-compassion among others [9, 16, 18, 20, 26, 47, 48]. Various interventions to promote wellbeing in parents of children with ASD have been done around the world but hardly in developing countries. Some involved spirituality [49] or multi component involving psycho education, cognitive restructuring strategies and compassion focused methods to help parents cope with, prevent, and reduce the harmful effects of self-stigma and eventually improve their mental health [50]. Varying degrees of success were recorded with implications for scaling.
Strengths and limitations of study
Findings from this study contributes to the information base on this topical issue especially in the developing countries where mental health services are grossly inadequate. The use of mixed-method approach increased the body of knowledge and rigorous data collection processes speaks to the scientific quality.
Being a cross-sectional study, causality cannot be inferred. Consecutive recruitment of respondents could also have some ‘clustering’ effect. Likert statements assessing stigma were phrased one-directional thereby increasing chances of response-set bias. In addition, the generalizability of findings may be limited. Further studies with a community component should be carried out to understand the issues surrounding ‘enacted’ and ‘self’ stigma.