ASD Knowledge and Stigmas in Tanzania

Background: Research suggests limited knowledge of mental illness or low mental health literacy (MHL) is a meaningful barrier to care (Wang et al., 2007), particularly in many low- and middle-income countries (Saxena et al. 2007). More specifically, in many African regions, individuals with autism spectrum disorders (ASD) have a diminished quality of life due to reduced awareness and prominent stigmas. While preliminary research has helped to document the minimal understanding of the symptoms and etiology of ASD in Nigeria (Bakare & Ebigbo, 2008; Bakare et al., 2009), this is restricted to one African country. Anecdotal information reveals that low ASD knowledge and concerning stigmas pervade many parts of Africa; however, there has been little research to systematically document the problem. 

Objectives: We conducted a preliminary investigation of ASD-knowledge in Tanzania, a country greatly in need of improved ASD services (Manji et al., 2014). Given that many disorders develop in childhood (Kessler & Amminger, 2007), parents are often responsible for an even greater degree of MHL; therefore, this study specifically examines ASD knowledge among Tanzania caregivers of children with ASD utilizing both quantitative and qualitative methods.

Methods: We examined quantitative differences in the level of autism knowledge among caregivers with at least one child diagnosed with ASD in Tanzania as compared to the United States. Group comparisons were based on data collected using a revised version of the Autism Knowledge Survey (AKS; Stone, 1987), which quantitatively assesses ASD knowledge through the use of 21 Likert-style questions about ASD diagnosis, treatment, and etiology (Sweizy, 2007). We also employed a qualitative survey previously used in Iran (Samadi et al., 2012) to assess the experiences of parents of children with ASD in Tanzania.

Results: The AKS revealed that caregivers from the United States (n = 30) had significantly higher levels of ASD-knowledge as compared to Tanzanian caregivers (n = 19), t(47) = 7.84, p < .001 on AKS scores. We will describe themes emerging from the subset of six Tanzanian parents who completed the qualitative survey. 83% (n=5) of parents reported limited verbal communication as a prominent concern for their children and listed this as a primary reason for seeking an initial diagnostic evaluation. 67% (n=4) reported knowing nothing or very little about ASD before receiving a diagnosis for their child and 100% of families requested more information. 100% of parents reported community members in Tanzania ubiquitously had limited ASD-knowledge and held misconceptions or stigmas about ASD (e.g., attributing the etiology of ASD to witchcraft or parenting). 

Conclusions: Current results confirm anecdotal reports of low ASD knowledge in Tanzania. Given that reduced MHL and stigmas area significant barriers to care, research should prioritize understanding these deficits and developing targeted interventions to increase community-wide ASD knowledge and minimize stigma in low- and middle-income countries. Interventions designed to augment knowledge about ASD is an important first step towards providing better care globally to children with ASD; therefore suggestions for individual and community-wide interventions will be discussed.