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Stigma of Autism Spectrum Disorder in Lusaka, Zambia, Africa

Sat, March 23, 4:15 to 5:45pm, Hilton Baltimore, Floor: Level 1, Latrobe

Integrative Statement

Stigma derives from a variety of factors (e.g., stereotypes, misinformation), and those stigmatized are often excluded and dehumanized leading to shame and embarrassment (Goffman, Link & Phelan, 2001; 2006). Stigma is also provoked by lacking knowledge, such as with autism spectrum disorders (ASDs) – especially in underdeveloped countries like Nigeria (Bakare et al., 2009), Palestine Authority (Basha, 2014), and Iraq (Muhammad et al., 2013) – keeping ASD stigma alive. According to the Diagnostic Statistical Manual (DSM-V, 2013), ASD is a neurodevelopmental disorder; however, because of cultural beliefs, Zambia has attributed disorders like ASD to “witchcraft and non-compliance to customs/norms in marriage”, parental negligence, and marital conflict (Drake, 1996). Within Zambia, the etiology of autism is barely known – even amongst professionals – leading to a lack of diagnoses and treatments thereby maintaining ASD stigma (Collins et al. 2011; Joachim, 2012).
Participants (N = 40) of this study resided in Lusaka, Zambia and included three groups: primary caregivers of children with a developmental disorder (n=16), stakeholders in the community within the field of child development (n=10), and psychology graduate students from the University of Zambia (n=14). All participants completed 11 items extracted from the Autism Stigma and Knowledge Questionnaire (ASK-Q; Harrison, Bradshaw, Naqvi, Paff & Campbell, 2017) measuring participants’ perceptions of social stigma, ASD etiology, and treatment as a result of stigma. See Table 1. Items one through eight were objective and scored for correctness. Items nine through 11 subjectively measured community perception of stigma.
Results showed stakeholders (M=83.75, SD=17.73) were the most informed followed by graduate students (M=78.75, SD=11.72) while caregivers were the least informed (M=72.66, SD=20.01), although no groups were significantly different in knowledge, F(2,37)=1.751, p=ns. Chi-square Tests of Independence were employed to examine the relation between groups’ knowledge of ASD. Item seven trended toward significance, X2(2)=4.80, p=.091, showing graduate students were most informed that it is important for children with ASD to receive special education whereas stakeholders were the least informed. Item eight was significant, X2(2) = 6.177, p = .046, showing stakeholders were most informed and caregivers were least informed about children with ASD being “extremely impaired” and unable to live independently as adults. Such ideologies are arguably sources of stigma, and collectively these results highlight the discrepancy in knowledge about ASD.
Historically, ASD stigma originated from misconceptions of its etiology (e.g., “cold parenting”; Farrugia, 2009). Stigma still exists in Zambia, as shown by 100% of respondents recently reporting a “negative opinion towards children with autism in some communities” (Rahbar et al., 2011). More research is warranted regarding stigma presence and methods to reduce and eliminate ASD stigma. In Zambia, and extending throughout the world, educational interventions are essential to change long-standing negative, incorrect opinions and misconceptions about ASD (e.g., family curses causing ASD). The current study spotlights varying ASD knowledge and emphasizes the need for education about ASD. Such educational interventions hold power to largely increase the quality of life of individuals with ASD by transforming mindsets through an insertion of empirical facts and knowledge.

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