The Face of Autism in Ethiopia: The Expression, Recognition, Reporting and Interpretation of Autism Symptoms in the Ethiopian Context

Background: To improve identification and intervention for children with autism worldwide a better understanding is needed of the cultural-specific expression of autism symptoms and of how these symptoms are recognised, reported and interpreted by caregivers. A good understanding of these cultural factors is essential to inform adaptations of existing autism screening tools and autism interventions to non-Western and low-resource settings.

Objectives: To explore the expression, recognition, reporting and interpretation of autism symptoms in Ethiopia.

Methods: Audiotaped semi-structured interviews were conducted with fifteen Ethiopian caregivers of a child with autism and with nine local clinical professionals with autism experience. Informants were asked to describe the child’s strengths and difficulties, and the caregivers’ main concerns. Probes included autism characteristics listed in international diagnostic criteria. Data were analysed using framework analysis, and compared and contrasted with findings from two previous studies by our group: i) a situational analysis describing the current service provision for children with autism in Ethiopia (Tekola et al., 2016); and ii) a structured survey in caregivers of children with developmental disorders, exploring their explanatory models, unmet needs and challenges (Tilahun et al., 2016).

Results: Most caregivers identified strengths of their children; several indicated their child ‘greets other well’ (social greetings are ritualised in Ethiopia and carry great significance). Clinicians and caregivers together provided locally prevalent examples of all main diagnostic symptoms. Problems with social communication were highlighted most: the majority of caregivers indicated they don’t understand their child’s wants or needs. Reported examples of restricted repetitive behaviours and activities included repetitive play (e.g. splitting grass); sensory sensitivity (e.g. to loud noises) and insistence on sameness (e.g. eating only injera). Most caregivers found their child’s inability to communicate the most challenging; several also mentioned lack of self-help skills or challenging behaviours. While caregivers could easily describe their primary concerns, some core autism symptoms remained unrecognised: ‘I only start thinking about this [non-verbal communication problems] now that you raised it. …We never thought of that’.

Several caregivers’ comments suggested that symptom interpretation and reporting may be affected by beliefs and stigma. These results corroborate our previous findings, indicating that autism families experience severe stigma (Tilahun et al., 2016) and social exclusion (Tekola et al., 2016), and that caregivers often attribute their child’s condition to spiritual causes and believe it can be cured (Tilahun et al., 2016).

Conclusions: This exploratory study from Ethiopia suggests the expression of core autism symptoms does not differ markedly from reports in Western countries. However, due to local belief systems, cultural norms and low levels of awareness some symptoms may be missed when using a standard Western autism tool. In order to avoid low sensitivity, prevailing caregiver-reported screening tools will require careful cultural adaptation. Moreover, existing autism interventions will require adaptation to local context and culture. The studies reported here have informed our current endeavour, adapting and piloting the World Health Organization’s Caregiver Skills Training for use in Ethiopia, leading to the first intervention available for children with developmental disorders living in rural Ethiopia.